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I Have Duane Syndrome, a Rare Eye Condition

I Have Duane Syndrome - A Rare Eye Condition

My left eye does not move to the left and is slightly off center. This is due to a rare eye condition that I was born with called Duane Syndrome.

My entire life I have had to compensate for my eye condition. If I look straight ahead, I actually see double. I have very limited peripheral vision on my left side. I have difficulty seeing if my right eye is covered (e.g., during an eye exam). And, interestingly, I can’t use 3D glasses!

Most people have never heard of Duane Syndrome and confuse it with a lazy eye condition. I’d like to share more about what Duane is all about—and how I’ve dealt with the condition from birth to my 40s, including surgery in my 30s.

Each eye has six muscles.
Each eye has six muscles.

What is Duane Syndrome?

There are six muscles that control the movement of each eye allowing it to move up and down, right and left and at angles. The muscles know when to move based on commands they receive from cranial nerves that exit the brain.

Duane Syndrome is a rare condition where the nerves and messaging from the brain simply don’t work correctly and therefore cause problems with eye movement. The problem is not with the eye muscle itself, but with the nerves that transmit the electrical impulses to the muscle. This is sometimes called “mis-wiring”.

In most cases, people with Duane Syndrome have problems with “abduction” or do not have the ability to move their eye outward toward their ear. This is the problem I have with my left eye,

There are also Duane Syndrome cases where people are unable to move their eye inward, also called “adduction”.

This is very different than the Lazy Eye syndrome, which is a condition where one eye is stronger than the other and clarity of vision is impacted. Lazy Eye problems can be treated and corrected.

There is no treatment to fully correct Duane Syndrome. Also, Duane Syndrome does not directly cause vision problems, but anyone with it is subject to normal vision deficiencies and may need contact lenses or glasses. (I do wear contact lenses, but not as a direct result from my Duane Syndrome.)

My Duane Syndrome Photos

My eyes today, looking straight ahead.
My eyes today, looking straight ahead.
My eyes today when I look to the left. The right eye moves; the left eye doesn't.
My eyes today when I look to the left. The right eye moves; the left eye doesn't.

How I Compensate For My Eye Condition

If I look straight ahead I see double images. To get a “normal view”, I have to turn my head slightly to the left and move my eyes slightly towards the right. When I am talking to people, they tend to follow where my head is pointing not my eyes, so they start sliding to my left and I have to start turning my body to the left. Sometimes we start moving in circles!

When I was a young girl, I wasn’t that good at compensating for my eye condition and remember getting called “cross eyed” from some of the mean kids. By high school, I was much better at compensating. Now in my 40s, very few people even notice my eye condition,

However, this constant “head turn” keeps my body out of alignment, so I have extra tension in my neck and upper back.

Also, since I don’t have good peripheral vision on my left side, I have to be extra careful when I drive. I double check traffic and look in multiple mirrors, whenever I am taking a left or switching lanes on the highway.

Video of Duane Syndrome Eyes

Surgery To Center My Eye

In addition to not moving outward, my left eye is slightly off center closer to my nose.

In my 30s, I saw a specialist at the world renowned MA Eye & Ear Institute who presented an eye surgery option. There was a surgical procedure available that would cut & stretch the eye muscles, which could lead to my left eye sliding back to a central position. If this worked, it could significantly reduce the amount of head turning I had to do- therefore helping to reduce my neck and back tension. There was a risk presented - that even if the eye was centered after surgery, it could move back to the original position. Even with this risk, since my insurance provided full coverage, I decided to move forward with the surgery. After weeks and weeks of extensive tests, the surgery was finally scheduled. I was put under anesthesia and the operation was completed in a few hours. When I woke up, I was surrounded by the doctor and her two assistants. They checked out the location of my left eye, made some minor adjustments with the thread from the stitches, then officially sewed up the surgery. Yes- kind of gross! For the first few months after the surgery, my left eye was centered. Unfortunately over the next year, the eye moved away from the center. It was not as bad as it was before the surgery, but it was no longer in the center. This was unfortunate, but even with the slight improvement I needed less of a “head turn” and the tension was reduced in my neck and shoulders.

My Eye Today

Now in my 40s, the general public does not often notice my eye condition, but most doctors still do. When you have those tests where you’re asked to “follow my finger with your eyes” or "follow the light," the left eye doesn’t move to the left.

I've actually had doctors who did not notice my eye condition—which is kinda scary.

Recently I went to a new optometrist to get my contact lens prescription updated, and there was a student doctor helping out. When he saw my Duane Syndrome he actually got all excited, since he had never seen a patient with it before. He asked if I would do a few extra vision tests. I was glad to help with his doctoral training!

I hope you found this article interesting, and that it has expanded your knowledge about the rare Duane Syndrome condition.

Duane Syndrome Resources

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Comments 328 comments

Dan C 7 years ago

Great information and well written


ajbarnett profile image

ajbarnett 7 years ago from Costa Blanca, Spain

Yet another interesting and informative hub. I learn something every time I read your stuff. Glad you're coping.


Kim Wells USNY 7 years ago

I know how you feel (sort of)... my sister also copes with this affliction. Her primary concern in the past was how people noticed and reacted to it - some folks are downright rude. I did have to chuckle a little bit though when you said some doctors didn't even notice it - which truly is scary... perhaps those doctors needed their own eye tests! :)

Stay positive & nice writing!


Reynolds_Writing profile image

Reynolds_Writing 7 years ago from Atlanta, Georgia Author

AJ.. Thanks for the feedback.

Kim.. Thanks for the info about your sister. It's too bad people have to be rude! I hope this gets better (i.e. stops happening) as she gets older.


LondonGirl profile image

LondonGirl 7 years ago from London

Interesting hub.

Do you have trouble driving, is it legal to drive?


Reynolds_Writing profile image

Reynolds_Writing 7 years ago from Atlanta, Georgia Author

Thanks for the feedback.. LOL-I hope it's legal! I can see to the left when I turn my head, I just can't rely on my eyes alone.


Connor's Mom 7 years ago

It's good to see someone with Duane syndrome posting their story! My son has DS, among many other things. Glad to know it hasn't slowed you down!

~Jess


EyeMan 7 years ago

Very informative Hub. Most of the articles on Duane seem to be from medical journals. This is the only information one the web that I found from a person living with Duane. Thanks for sharing.


faith 7 years ago

Thank you for the information. I also have Duane Syndrome. My name is Faith, 7 years old and from the Philippines. I hope someday somebody can help us.


Jo 7 years ago

Wow, your WHOLE story sounds just like me (our age, the surgery, the head turn, being called cross eyed at school, same eye, tension in the neck/shoulders, head turning) - WOW I'm not the only one, I must go now - I will post more to you later. Regards, Jo


Reynolds_Writing profile image

Reynolds_Writing 7 years ago from Atlanta, Georgia Author

Jo.. Thanks for your comment and follow-up email. I am glad you found the hub helpful and I wish you luck in your decision around eye surgery.


Debbie 7 years ago

Thanks for your post. I am 40 with Duane's also. I compensate with the head turn as well. I am actually having surgery tomorrow. I was amazed to find a doctor that said he could help. I had always been told the condition was not treatable. I am very grateful I was able to read your experience. I am not terminally unique. Thanks again.


tia 7 years ago

hi there...i found your post after searching duane syndrome because my one year old son has been diagnosed with it. Questions I have are:

Should i get him the surgery now?

Will his ability to play sports be impaired?

How should i address it with him as he grows? I do not want to make a big deal about it or give him a complex. I want him to feel confident about it and not embarrassed so he can deal with anyone being mean to him.

Is there any exercises i can do with him to help?


Brian 7 years ago

I also have it, although i never knew what it was called. Had the cross eyed name calling thing too, which sorta sucked, but everyone's got something they get made fun of. I have decided against surgery cause i've gotten along fine this far. Sure i'd like it fixed but i don't want to make it worse either.

For those parents i know its gotta be tough but as far as socially its only an issue early on, by high school i was normal, popular, dated etc. (i guess from maybe learning how to compensate better?). And as far as sports i was on varsity baseball, basketball and soccer for 2 years each and started for a 3A high school. So if you're good it won't hurt you, the biggest thing was i had to learn how to switch hit in baseball at about 12 or whenever it was that curve balls were being pitched, i'd start your kid off batting lefthanded.

I was worried my kids might get it but so far my daughter doesn't have it and I have another on the way so we'll see. But it really isn't a handicap or anything, just an annoyance. Its harder when you're younger but eventually you adjust and since i don't know any other way to live, i'm doing fine. Its almost like having only one good eye but with the peripheral vision of 2.


Reynolds_Writing profile image

Reynolds_Writing 7 years ago from Atlanta, Georgia Author

Brian, Tia and Debbie.. Thanks for sharing your own experiences with Duane Syndrome. We are all part of a special club!! Best of luck to all of you. RW


Virgil 7 years ago

Great write up, I too have this disease. I was trying to explain this to my brother and searched the net for more information. He was curious because he had a lady stop her at the airport to ask for directions. He said both her eyes were like mine but worse, and clearly struggled with it. But I'm sure she had a very severe and rare form of this rare disease, as I've met lots of people with it, including an Airforce Pilot, and all would say their daily lives are totally unaffected.

Here's my story for parents like Tia, and other interested.

I was diagnosed at about a year old, when visiting family noticed I sometimes looked skewed at a toy on my left. In my case, my eye is 'stuck' in the middle, and only moves left slightly, meaning if I try to look over my shoulder I have to turn my head a bit. I have 2 siblings, they are totally unaffected, and 2 nieces who are also unaffected, making me think it's a recessive-genetic trait.

I personally opted agaisnt surgury around middle-school when it was offered. It's possible that my head tilt adjusted naturally as a child since I needed glasses for sight, or that my case is so mild it was never a big issue. A good example would photos, myself and family would see the obvious head-tilt because of duane's, but friends and stranger's would have no idea. I've personally never had back problems or neck strain either, but I'm still in my mid twenties.

I think sports will not be affected at all by this. Once I got to the high-school level, my teammates loved it, especially in baseball as I could really mess with the pitcher, and any advatage was worth it.

I suppose I was just as awkawrd as any high-school boy when it came to 'social events,' but I still dated and did the prom thing. Sure it was noticed, but it was never an issue. I couldn't really say how it affected me during that time, but I will say while some seem traumautized by high-school, I still have good friends from then.

Talk to your doctor, but I've always thought of it as a gift. I view it as a constant reminder that in the spectrum of human conditions, Duane's in nothing compared to Huntingtings or others that affect your life and your mortality so drastically. One thing to remember, as with any surgery there is a risk. As a child I was active in team sports, still am active today in old-fart leauges, am an amateur astronmer and currently takign flying lessons. In case you are wondering, the FAA exam not only didn't care, it wasn't even asked. If I didn't mention it the doctor wouldn't have written anything down.

One thing duane's has tought me, your vision is precious, don't take it for granted. Unless it's absoluetly required, I'd never risk the surgery to correct eye position. For that same reason I'll not go under the laser corrective vision surgery, it just aint worth it IMHO.

If your worried about your child at school, all I can tell you is to love them. Do that, and no matter what they'll be happy in the end. Remember that every child is teased for something. I might have been 'cross-eyed' to some, but those same kids were something else to others. This mild diesease tought me early that feelings matter, and to treat others how you'd like to be treated.


Gina McLemore 7 years ago

Its taken me years to compensate, only now when I feel comfortable I don't mind not correcting my head lol......My neck does stay stiff....I never realized i had a lean to my left side....i do notice when i watch tv I lay my head on my shoulder and when i get up I have major double vision..... so happy to read about your experience..makes me feel like I have someone who understands


Abbey 7 years ago

I looked up this on google because i have this eye problem. Im 11 yrs old and i hate it. I've been teased all my life but recently got a model job so my confidence has boosted. Your story is inspiring.


Jake 7 years ago

I've got DS, it is not a problem for me. I am a mixed martial arts fighter (what you would see on UFC), and it does not prevent me from excelling at the sport.

Further, most people do not notice it. I just don't look left, and I have enough pull on my left eye to allow for a little glance to the left. So the head turn is not necessary.

Though, when I am tired it does look like a lazy eye.

I probably won't get surgery for it... It actually is slowly getting a bit better.

Good read though


Rekha 7 years ago

Your story was inspiring. My daughter has it. But she is very good at studies and has a matured way of dealing with it even though some mean people make fun of her. she is twelve years old now, I hope this doesn't stand in her way of achieving success.


Lana 7 years ago

I have it too. And as story says it is hard only when you are a kid and get teased, however on a good side it was easy to sift out friends :-) So you may even consider it a gift for that matter!

I am over 30 now and of course learned to compensate by turning my head and positioning myself so that I as if have to look at you at some angle. It came naturally. I do think that most people would not even notice anything odd. My husband did not know about it for several years until I told him.

In my case I did not develop any neck or back tension (at least so far, probably being active in sports helps). No issues with driving, sports, 3D, etc. Basically I am lucky to be not affected in any other area of my life. Yes, if you watch me reading a book you would notice head turning, or on pictures I appear always looking at the camera from one side :-) There was a fear that neck will become deformed with years, luckily nothing like that happenned. On the opposite I think it made my neck very movable :-)

I did not have any issues with dating and frankly mostly only vision exams now remind me of DS. Those are always make me think what Guinea pigs feel like :-) I loved the story about doctor's. Here is mine: one doctor examining my double vision (I was 15) asked "So... how many dads do you have?" Again for me it was always a good way to identify idiots :-)

Girls and boys, think of it as being special, because you are! After you stop interacting with kids, teasing stops, and after that only on vision exams you will be reminded :-)

Thanks to everyone for sharing! I was glad to find the article and hear I am not the only one.


Charlie C 7 years ago

I have Duane's and i hate it so much i got bullied so much as a kid and beaten up just for looking different. Wen people call me bozz-eyed it hurts so much my temper just let's fly and i get into so much trouble i try to be posotive about it but it just feels like a curse. it's rare but not rare enough for me not to have it. it's hard to get a date or anything because the think i'm cute until i start talking to them n the whole head thing it just sucks. I HATE THIS!!!!


Dominic gilbert 7 years ago

Perhaps stem cell research will one day solve this.


Natalie 7 years ago

I have Duane syndrome... my right eye cant look to the right. I'm 13. no one notices it really.. I'm really nervous about when I'm gonna start driving. i don't really care about my Duane syndrome because i can't miss what i never had. the only thing i really care about is appearance because it looks like I have a lazy eye and in pictures i look horrible because one eye is facing the camera and the other is in it's own little world.

It's was nice reading your story because I've never met anyone else who has Duane syndrome. :~)


Jordan 7 years ago

I'm glad I found this because I've been considering surgery for sometime to fix my Duanes. Unlike you my eye tends to move inward when I look straight at someone. Ive had a lot of health problems here lately so it has gotten a lot worse. I think being a girl is what makes this syndrome so difficult. I am very self conscious about it, and always feel like people are judging me by it. I know that I am very fortunate to just have this one condition but it is very difficult to live with when going through school with so many cruel kids looking to find something flawed about you.


Alexis 7 years ago

I am 15 years old and have been having DS sence birth.I have very low self-esteem and really bad at giving eye contact because of being self contious of what people would think or say if or when they notice it.(I said if or when because most people say they don't notice it until i turn my head a certain way or look up at someone.) I really want to do something about it but don't no what to do.I don't want to get surgery because most people result after getting surgery,there eye problem got worse.I have been in cheerleading and danceteams all my life.Now that i have gotten older and sel-contiouce of my eye im on the dance team at my highschool but cant dance like i want because of my self esteem and confidece(I tend to always hold my head down when i perform because of not wanting people to notice :-(. But thank u Mrs.Reynolds for your hub. That was very nice and brave of you to share your information with the world:-) Please if you have advice for me please let me know what i can do


john 7 years ago

Hey everyone. The only way that this syndrome affects me is when I go out to dinner and have to look up at the waiter. I get paranoid because I don't want my date to look over at me and my eyes are all crossed and stuff. What should I do. Please help.


Ciara 7 years ago

Hello! I'm 23 and from the UK and have Duane's too, same story, people often noticed at school but do less and less now, partly because people are more polite and partly because I am good at hiding it. A few notice the head turn though. The only time I really notice is if someone sits to the left of me at dinner, I have to turn and face them to speak to them which can be awkward for the person on my right, and it seems a waste of time to try to explain.... For 7 years or so I have worn my hair so that it covers the outer edge of my left eye slightly, which helps me to not feel self conscious. It's great to see your pictures and everyones comments! x


cortney 7 years ago

I am 21 and my parents knew i had duanes from a very early age, either the doctors didn't tell my parents much or they chose not to remember it, but this hub has been so much help i had no idea that the reason i turn my head or close one of my eyes while reading was because of the syndrome. I have alot of other weird things happening with my body and i was wondering if anyone knew wether or not it could be with my duanes. i know that doesn't really make sence but if anybody might have some answers for me PLEASE write me at whispree@yahoo.com, thanks a bunch all of you :)


Shannan 7 years ago

I just found out my 10 month old infant has Duane's Syndrone yesterday. It breaks my heart because I know how mean kids are and know she will be made fun of. I cried when I read your story. Does every one with the syndrone have double vision?


Brad 7 years ago

27yo male same story as you to a T. Except i never had double vision or any surgery. Being called cross eyed in primary school was the worst of it! But as i got older i learned how deal with it. My wife had no idea i had an eye problem until i told her about 5 years into dating before marrying. I have got that good at covering it up. I try to sit to the left of people and turn my head when i look to the left. It only bothers me if i think about it. I don't have a sore neck and i can keep my head straight but do tend to turn it slightly.


tommy 7 years ago

i'm a 17 year old junior and i have almost the same condition. i got the corrective surgery a few years back and it correct my natural head turn by about a degree- almost no noticable difference- though i don't have to deal with double vision when looking straight ahead. the condition is tough in school, as being seated is difficult when talking to someone on my left. i often have to resort to not talking to people and appearing rude or uninterested, which i would actually take over getting the permament title of "cross eyed". covering it up is hard at times; aside from my parents only my best friend and an ex are aware of it. hopefully a complete corrective surgery will come about in the near future


Hays 7 years ago

I’m in my early thirties and also have Duane’s syndrome. My story is very similar to most of the stories I’ve read on this site. I’ve never meet anyone else with this syndrome.

It’s been very interesting reading everybody’s stories and I appreciate all of you who have shared your story. The following is some my story.

I have a beautiful wife of and two small sons, neither of which have the syndrome. I’ve worked in law enforcement for over eight years. I’m very aware that I have it, but have learned to compensate over the years. I do have a slight head turn, but never noticed it until I read the previous stories and only realized it then. My vision is 20/20 and I do not have double vision. I’ve had several physicals and none of the doctors have every notice it. Most people don’t notice it, but occasionally I will be reminded when someone does..

For those of you that are younger reading this don’t let this keep you down. I’ve had a good life, because I told myself at young age that I would not let this keep me from doing what I want in life. I even took flying lessons and told the doctor doing the FAA physical that I had it. The FAA doesn’t care unless you’re attempting to get a commercial license. Only thing that it has every keep me from doing was joining the military directly out of high school. Which with the current situation was probable a blessing. Remember that god puts things in our lives to make us what we are or to direct our paths in the direction that he wants us to lead. My life would be a lot different if I don’t have this syndrome. I don’t know if it would have been for the better.

For those of you that have children with this, just remember it’s not life threatening. They’re a lot worse things in the human condition that they could have, be thankful it’s not something a lot worse. If anything it will build a lot of character in your children at a much young age then most. They’ll know what it’s like to be made fun of and want make fun of others and they’ll learn to find like minded friends. Some have asked if it will affect their children playing sports. It did not affect me, I ever was a four time high school wrestling state qualifier and placed three of those years. So they’ll get out what they put into it just like everyone else.

I hope this has been helpful, if anyone would like to talk in more detail, or have questions concerning their children, or want to share experiences. My e-mail address is hays2000@gmail.com


Toronto 7 years ago

I have my 2 years old daughter with DS. Her left eye doesn't turn out. when looking straight or to the right she looks normal. she doesn't turn her head when looking straight. One thing we have noticed is that the size of her left eye is not growing with her age and is now very small compare to her right eye. Is there anything that can be done to balance the size of 2 eyes. I was wondering if putting a patch on her right eye will force her to use the left eye...any suggestions will be hightly appreciated


Washington 7 years ago

My son has been coping with this sense birth. Hes now 9 years old. After quiet a few years of him being mistreated and misdiagnosed we finally found a doctor after moving to a completely new state(military) that worked with the doctor who discovered DS. I'm very grateful for your post i have not been able to find very much information about this we are now located in yet another state so we are in search for a doctor who has a knowledge of this. Its been so hard to watch him at times cope with this and not be able to help him. And yes hes suffering from mean kids at school and i have had quiet a few conferences with teachers some seem to not care at all others tend to watch him more closely as this new school year is just starting i'm hoping he can finally have a tiny break from the teasing so he can enjoy school for a change. Sorry for being so long winded. Again thank you so much for your post it helps knowing hes not alone.


Mel 7 years ago

My 9 month old daughter was diagnosed with Duanes Syndrome today. It's been great to read something from the perspective of someone with Duanes. Many thanks!


Sarah 7 years ago

Hi, I am 24 and from the UK. I also have DS in my left eye and I'm unable to look left. I only discovered the name for it a few years ago whilst having a routine eye examination. I can look straight ahead and to the right perfectly fine.

Like others, I have learned to live with it so it is not much of an issue now. In fact, I rarely notice it as I compensate instinctively. Up until high school I think I was too young to take any notice and during high school I was never really bullied because of it. Kids did notice it - some used to call me cross-eyed, but most used to call it my 'funny eye' and thought of it more as a cool party trick than anything else. Since school, I have to say the only people who have noticed my eye have been the Optometrists. Boyfriends/new friends/work colleagues have all failed to notice it - and if they have noticed it, they've obviously been too polite to mention it! I generally try to avoid telling people if they haven't noticed, as I feel they would only keep looking out for it. I make sure I sit to the left of people to avoid having to turn my body left to talk and turning my back on someone who is on the right. I do not drive yet so imagine having a passenger sitting to my left may be a bit of a challenge!

I slightly turn my head from side to side whilst reading a book and have a tendancy to slightly tilt my head to the left whilst talking to people and watching TV etc. I only experience blurred vision if I try to look left with my eyes only rather than turning my head/body.

I have never met another person with DS so it is really interesting and useful to hear other people's experiences. Thank you


Melissa Auret 7 years ago

Does anyone know what the statistics are for the rareness of DS?


Kimberly 7 years ago

My 13 year old son has DS. He was diagnoised with DS at two.He wears glasses.He was told there is no cure and surgery wont help eighther.He does not have any problems with sports(besides broken glasses)He can control his eye.I think its interesting that it is always in the left eye.


Cammie 7 years ago

My almost 11 year son has DS (left eye) but he is also very far-sighted (7.25). He was diagnosed when he was 9 months old with both. He has worn glasses to correct the far-sightedness since then. He only has a head turn when he takes his glasses off. He would like to try contacts but I wonder if the glasses have prevented the head turn since he has to look straight through them. I am worried that contacts will not have the same affect. Any ideas?


Jody 7 years ago

My story is so similar to yours that I felt like I wrote it. I'm 47 and very interested in exploring surgical options. The older I get the worse the neck & back issues become, to the point of debilitating pain. How can I find a specialist in Florida? I've spoken w/two optometrists in Orlando and both stated surgery wasn't an option.

Thank you so much for sharing your experience.


paris 7 years ago

i have this two i have been tesed all my school life i found out i had it at about 5 and at 8 had sudgery it worked a little bit i have it in both eyes i can see fine but lots of pepole think i can see two of them now at 16 i am considring more surgey so those who r suffering from this i no how you feel


Brandy 7 years ago

Jody ~ I am in Tampa, FL and have had surgery. I, too, feel like I could have written the original story. I stumbled across a doctor who is a strabismus specialist who informed me that I actually have Duane's. The surgery didn't correct all problems but, in my case, has improved my head turning for the present moment. I would definitely recommend that you make sure the surgery risks are worth it, since every surgery and case will be different. If you are still curious about surgery, my doctor is Dr. G.S. Guggino (Guggino Family Eye Center - phone number: 813-879-7711). Good luck!

I would like to reiterate the importance of what Hays said above...it is what you make it. This is, most importantly, not life-threatening. Life is too short to dwell on minor annoyances...you can choose how much you let it or don't let it affect your life. Thank you to all who have shared...it's nice to know that there are other people who are successfully dealing with the same thing I have!


bobby w 7 years ago

thx for the info im going to make a website for ds victims im hopeing that there is a camp some ware cuz it is stresfull i tell ppl that i have duanes syndrome and they just make fun of me and say its not real plz tell me if ther is maby a camp or any ways to make it better or umm help cuz i don't have any money for surgery


Crystal 7 years ago

Hey guys I know exactly how you all feel. I am 18 years old and a freshman in college. I was diagnosed with DRS since the age of 2. When I was younger, middle school and elementary school was tough. Kids are cruel. However I was always one to respond back, with a clever/witty remark. Then the would usually stop. As far as the parents out there that are concerned I just wanted to give you some advice. If your child has most likely discovered this, either themselves or from a friend. I remember when I was younger and my friends would ask my what was "wrong" with my eye. I had 3/4 of my class thinking it was a magic trick. The reason I'm bringing this up is simple: your child knows. So as they grow up either don't mention it often or bring it up, like it's some sort of disability. Whenever my parents would bring it up, especially during my early teens. I would become extremely defensive and self-conscious.

In regards to sports, it has no affect on your playing ability. I started all four years in Varsity Soccer, Track, Tennis and Basketball at a 4A high School. And I currently play soccer for my University. It has actually given me quite an advantage. In tennis while playing I would freak out my opponent. And while taking penalty kicks in soccer I would mess with the goalie haha.

The way I "look" at DRS, is what's the big deal? There are children and others in this world who have much MUCH worse conditions and disabilities. I always joke and tell my friends that I'm part of "The Elite Club!" I hope I helped at least one person. Take Care everyone.

"Don't Worry, be happy!"


Alberta 7 years ago

IN reply to Toronto....My son is now 5 years old and was diagnosed with DS when he was almost a year old. We got help for him right away thanks to our family doctor. We only patched him by his specialist's direction when he was about 2 years old. It was for about a period of almost 6 months...not easy at that age to do but we all persevered. he is doing well now but still sees his opthomalogist yearly as well as we go to our children's hospital's eye clinic yearly as well to stay on top of things. I've noticed since he just started kindergarten this year that he's not tilting his head as much to the left and therefore crossing his eyes more than ever...possibly really tired too. His left eye won't turn to the left only and yes, the eye does appear smaller but I believe that's only because the muscles in that eye retract when they aren't supposed to which is why they call it Duane's Retraction Syndrome. I don't think it's because the eye is actually smaller. He's a feisty kid and theb last of three so I don't think he's going to put up with much teasing at school but we'll see...it'll be alright :)


conor 7 years ago

I also have duane syndrome. You know who else has dusne syndrome?? The dude from The Waterboy. "Hey you remember the time Bobby's pants fell down and he ran bare-butt all the way to the end-zone?"

Thats one of the impressions I like to do because my voice is awesome and I can make my eyes Duane like his eyes Duane.

When I look forward i do not see double. I do, however when I look to the left. My left eye does not go past the center. Im sorry that you do. That would make having Duane Syndrome tough. I actually kind of like it because I think it fits my personality well.

IF YOU HAVE DUANE SYNDROME STAND UP AND REPRESENT! I personally think the 'mis-wiring' of our eyes is only fair as we surpass the overall coolness and utility of most other human beings. Do not apologize for being awesome. Use this gift to make people laugh and mess with people.

Im out like a fat kid in dodgeball.


Debra 7 years ago

I think I might be the oldest in reading all the hubs here. At 55 I have been dealing with my DS for all my life and was finally given a name to it only 15 years ago. My right eye is the one effected and like most of you have compensated all my life with it. Many times I wish there was something that would help, but I was never severe enough for surgery and most people do not notice until I point it out to them. Working with bi, tri progressive focal glasses has been the hardest to deal with with this conidition.

Good luck to all you newbies with this condition. Yes, kids can be cruel but people do get better with age.


Nelson 7 years ago

Hi!

I'm Nelson, I'm venezuelan(26)and I have DS too. since early puberty I experimented pain in my neck which increased with time and 'till today I didn't have the certainty that pain was related to DS (I don't remenber doctors said anything about this. I started to visit doctor to cure my pain and none thought about my DS condition...they said my pain could be Psycosomatic. Seriously the pain is killing me, I am cannabis user and cannabis help during all this years to ease the pain but it seems to be it isn't working like before, I am systems admin in a company who offers a little insurance I will do anything to get the money in order to find the possibility of surgery.


darwinsgod 7 years ago

i have this problem as well however i can not laugh at it and pretend its all right. It has made me socially awkward, girlfriendless, mean, shy, ruined my chance at being an actor. so what good is it. i hope researchers find a way to use stem cells to fix the problem. ugh i hate it. im 19.


Salina 7 years ago

I was born with DS but nobody noticed it really till i took a family trip to tennessee when i was 2. and within a few months the doctors told my mom that if i didn't have the surgery on my left eye i would have to have it when i was 18. so i had it done so soon after finding out that i had it. (i still remember all of this pretty well). it was really bad i was always walking in walls and it looked like i was crossed eyed all the time. it has now been over 18 years since i had it done. people don't really notice i have anything wrong unless im looking to the left or right because they centered my eye. i know if i had not of had it done i wouldn't have done so well with school, have overcome my shyness quite abit, or even get up on stage for the first time. now when i go to the eye doctor they don't notice it until i tell them i have it.


Jennifer 7 years ago

HI......excellent information. We found out today that our 2yr old son has this condition in both eyes...so I am trying to find out as much info as I can find . He has been wearing glasses since June because of his left eye turning inward. This is another thing that we are dealing with. This information you have on here was very helpful.


Mayra 6 years ago

My daugter was diagnosed at age two with DS. Her left eye can not move inward.She is 5 and starter k this year. I am going to look into surgery when she is old enough to understand and help me with her choice.I am starting to think it's more commen than we really think it is.My fear is that this will affect her confidence because she is a very strong minded little princess...doesanyone know of any websites to look under for surgery?


brookley crowder 6 years ago

Hi my 17 mth old daughter has duane syndrome in both eyes. she was diagnosed at 6 mths and she wears little glasses but im so curious to know how she sees the world. u said u have double vision in ur left eye so i really hope she doesn have double vision in both! her dr says theres no cure but im determined to find something. another worry of mine is how other children will treat her when shes older...


Kate 6 years ago

Hey all! I'm currently 25 and was diagnosed with a lazy eye at a very young age. I wasn’t diagnosed with the accurate diagnosis of Duane’s Syndrome until I was in high school. I learned to control it, for the most part, on my own by around 1st grade. I don't recall my parents ever really discussing it with me. The only reason I recall it at that age is because I had double vision and migraines (which have always remained) associated with it. Yes, kids can be cruel. Luckily, I was able to play it off as a trick...the lil boys were quite intrigued by how unusual it was. If I was teased, it was quickly forgotten. I compensated for the double vision by shifting my head entirely when people wanted my attention so that I was looking straight into their eyes.

I saw that someone mentioned driving...I was concerned it would cause problems when I started driving as well. At least with me, I had no problems driving. I just double checked over my shoulder regularly so that I wouldn't accidentally hit anyone while getting in the left lane or backing up. Doing that is probably safer anyway, regardless of the Duane's! Regarding the comment about someone being self-conscious about ordering from a waiter on dates...1) Request a booth, if available, 2) I know it may be construed as rude while on a date, but choose to sit on the side of the bench that causes you the least problems before your date sits down, and 3) you don't necessarily have to make eye contact with the waiter. This is something I had to figure out over the course of years. If someone doesn’t want to date you because you have Duane’s Syndrome, it’s their loss and just shows how shallow they are. Would you really want to be with someone who may judge you based off something you can’t control? There are plenty of fish in the sea, even though in the teenage years it may be hard to see. I didn’t find it to interfere with sports either. Like someone else pointed out, sometimes you can use it to your advantage :)

People rarely notice my eye unless I slip up with normal control, am drinking, or am exhausted. If they ask, tell them. I find people quite interested and would love to be informed about the condition. In this day and age, even if it’s not visible, the likely hood is high that someone is struggling with some health condition.

I hadn't found it seriously problem causing until I decided to go pre-med in college. I struggled when it came to focusing through microscopes. Again, adjustments were made, such as keeping my eyes a little further away from the lens. The past year I've struggled with keeping my eye from crossing, therefore, making my migraines worse. Everyday sight isn't bad at all. My only problem is when it concerns reading, so as odd as it sounds, I wear a (pirate...argh) patch over the weak (left) eye so that I don't have the double vision while I read at home. I've only noticed problems with intense reading. Since I can't always wear a patch and the problem is becoming worse, I'm finally considering surgery to see if that helps any. Glasses with prescription or prisms didn’t help my problem at all.

It may have caused life to be a little more difficult for me, but it’s made me who I am today and wouldn’t have it any other way. It’s made me far more empathetic to those who struggle with other health problems. Sorry for the novel!


Chantel  6 years ago

Hi, this is a great site. ive been trying to search for eye make up tips for people with duane syndrome as i look daft when i were eye liner, one of my eyes is a football shape and one rugby ball shape due to duane syndrome. i find i move my head to be able to look straight because i find my eye sliding into next week if i try to keep my head straight. lol thanks for the extra information x


Jill 6 years ago

I have it too. Im a young adult and ive struggled with it all my life. Ive learned to accept it now. but id still love to fix it, so what's the truth? is there a surgery possible to help it at all? even fix it?


Samuel Neely 6 years ago

Hello to all. I'm so glad I found your page, I read your story and I thought I would share my part too. I have duane syndrome as well, I can't move my right eye to the right. ever since I can remember I was always scared to meet people and interact with them, cause I thought they would make fun of me...or when someone calls my name and they're to the right of me, I usually wont look. I am 25 today and I'm still very depressed about it...I wish a cure was out there. I'm trying to be more open about it, but it's hard, since I have two other medical conditions...hypopituitarism ( a growth hormone deficiency ) and thyroid disease...A lot of times I'm alone and can't help but to think I'm ugly, dumb and why do I have all these problems? but seeing beautiful people and reading others with this same problem makes me feel happy. I wish you all luck in the future and hope to someday run into some of you...


jadeee x 6 years ago

hello

ive got duane syndrome i don't have double visoion with mine and its only when i turn my head one way not both

if you av anymore information you can help me with please email me

jadeMARIEx@hotmail.co.uk

thankyoux


David Leblond 6 years ago

Hey! Thanks for posting this entry, I shared it with my friends so they knew why I couldn't see all the neat 3D effects in the movie Avatar. It's kind of curious though, I remember distinctly watching Captain EO (http://en.wikipedia.org/wiki/Captain_EO) at DisneyWorld when I was little and I could see the 3D effects just fine. Avatar though? Nada. And those stereograms? I could stare at them all day long and nothing ever pops out. Sucks that all these 3D movies are coming out and I can't enjoy a single one of 'em!


Melissa 6 years ago

My daughter has duanes syndrome and she is still learning to compensate for it. She is also teased at school. Some kids call her a one eyed freak and it just breaks my heart. Usually the ones that call her names are ones that don't know her and once they get to know her, they do apologize for it. The other day I noticed in a picture she recently took that her eye ball was orange. Should I be worried about that.


Troy Miller 6 years ago

I have Duane Syndrome in my right eye. I got this from my father's side of the family. So far I have 2 boys with it and one without. One child has it in his right eye and the other son has it in his left. I also received Ptosis (a drooping eyelid) from my mother's side of the family. So far, I am the only person in my immediate family to have this condition. For fun with the doctor's knowledge my parents also gave me Congenital Contractural Arachnodactyly and Bipolar disorder type II.


Cathy 6 years ago

I've just been diagnosed with this too, and my experiences in life almost completely mirror yours. It's uncanny. I knew I was compensating for the lack of movement in my left eye but I learnt to live with it, however since hitting my forties I've found it harder to control the double vision and decided to seek help. Throughout my life I've been told by opticians and even one eye specialist that I simply had a lazy eye. I'm relieved to finally understand what it is. Thanks for sharing your experiences.


David 6 years ago

I know a fair bit about various eye conditions and disease but have never come across Duane Syndrome. It sounds like something difficult to live with. But i'm sure this detail hub post atleast provides other people who suffer from it with enough detail to make the right decisions and learn how you can live with it. thank you for a great hubpost.


Margie 6 years ago

Hi I'm Margie and I have DS. I'm 15 and it doesn't affect me at all during sports. I play field hockey, swimming, and lacrosse at a blue ribbon school. i have a ton of friends, a previous boyfriend (who I dumped) and now texting a senior, not to mention he's very cute and popular. got recruited for lax by princeton! :-) i feel really self conscious when i'm around people, especilly when i sit on the right side of a class room. i've learned to cope im just scared of when i take my drivers test, or when i go for my senior photo shoot when they ask me to look to the left. for parents it's not a big deal, i personally was never teased. i just get very awkward when people speak of a lazy eye around me because i feel like they're talking about me. but my life's not bad i'm not complaining.


Dave 6 years ago

Hey we maybe cross eyed but atleast we have an eye that works! Some people are born blind or missing a limb. Its only a tiny problem to have to live with. But i do feel for females more as the are more vain by nature.


Bill 6 years ago

Thank you for a very informative insight into Duane syndrome. I saw it in a patient for the first time yesterday (I am a McTimoney Chiropractor), she knew all about it already of course but it was new to me. She has/had 3 cervical (neck) vertebrae rotated to the left causing neck pain, this may or may not be related to the fact that her head is always slightly turned due to the syndrome but it is something I shall now take into account.


soheyla 6 years ago

Thanks for writing this article it was very informative, I too have Duane's syndrome, type 3, though and it is great to know I'm not the only one. I was lucky enough that y parents caught it early, since my dad has it as well.Although I am only 16,I've found many tips that help me. When I read a use a slanted book stand to relieve the stress on my eyes, and I use prism eye glasses as well. I also tend to get my books in large print since smaller print tends to put more stress on my eyes and cause headaches.


Soheyla 6 years ago

As I was reading the other articles I realized how many people my age are really upset by the fact that they have it. Yes, it is an annoyance ,but don't let it lower your self-esteem. I have the worst type, Type III and I don't let it get in my way. I have a 4.0 gpa and I play club volleyball and I am a setter. In fact, this disorder has made me stronger. At first, I took offense when people asked about my eye, but I realize many are just curious not judging you. Not only do I have Duane's syndrome but, ADD as well. So don't let anything get in your way overcome, embrace it and thrive, after all you might as well you can't get rid of the disorder. Because of my disorder I plan to become an eye surgeon and help others.


Niki  6 years ago

Hi. I have Duane's syndrome too. I was once offered the operation you had but decided not to go ahead but I'm wondering again now. Since then, I've had laser eye surgery to correct my short sight and I think that something about not wearing glasses has thrown my coping mechanism off a little. I get a bit of double vision and my condition is more noticeable than it was, so I've been wondering recently about whether to think about the operation again. I certainly do suffer with tension and neck problems. Funnily enough, I'm much more comfortable with it than I used to be, and am happy to talk about it these days but I still rather people knew who I was looking at when I was stood at the front of a room answering questions! I do find it kind of embarrassing when someone looks behind them because they think I'm looking at someone else!

I've never had a doctor not notice my condition but I had had them worrying that something's gone wrong when I've had a bump on the head a couple of times. I've become much more adept at spotting the situations when it needs to be mentioned so avoiding their unnecessary concern.

Good article on the condition and issues around it. Thanks for writing it.


niki 6 years ago

@Dave females = more vain by nature. NO!!! Under more pressure to look a certain way, perhaps. Although, to be fair, I've never found my eye condition a problem when it came to attracting the opposite sex. In fact, I've had men tell me my eyes were cute or even very sexy in the past actually because of my condition. Strange but true.


penelope 6 years ago

i'm doing a school project on Duane syndrome and this was a very fun yet informational article to read. all the other websites were written by doctors and professionals but never by a person who actually has Duane syndrome. im sorry to hear your surgery didn't work out, but it seems to me your doing just fine. Thanks! bye


penelope 6 years ago

also i think you should write a book or something. you're really good at writing. maybe something about a girl with duane syndrome.


Kelsey  6 years ago

Hi im kelsey. I'm 14 years old and also have the duane syndrome. Everything you said in that article was true about me! i also can see double too. i related to everything you said, but luckily no one makes fun of me in middle school. Im fortunate enough that it isn't as bad as when i was younger. It gets annoying sometimes because i always have to slighlty turn my head left too. it seems that you have exactly what i have. Having this issue doesn't seem to bother me which is good. Thanks for writing this article it means a lot.

- Kelsey(:


david 6 years ago

Hi i have had this DS all my life and it didn't bother me so much when i was a kid, When i started high school in soft more year i was in my math class taking notes and i notice my head going to the left a little. I told my self why am i keep turning my head its like i had no control of it at the time. So i started to turn my head straight and it was so uncomfortable for me to stay that way. Even if i wanted to keep it straight a couple seconds later it will go back to the left sometimes i didn't even notice it going back. Now am 21 in college still having problems and i even get eye ace's i don't even know if that's a real word. Sometimes my eye will hurt so bad i had to put pressure on it or some ice. I have been to couple of eye doctors clamping about the pain in my right eye that's where i have DS. None of them could tell me why i were getting that from and what was causing it. SO they took a Cat scan to be sure they were no tumors growing. The result came good, but the doctor did say that there extra tissue growing under my eye bone. I will finish this case later its 2:30am tired and oh yeah my eye is hurting right now.


Deni 6 years ago

I have it too :) Never knew that it was called Duane's.

It's definitely been hard to overcome, but I've pushed myself. I do a lot of modelling, seemingly have gotten away without anyone noticing it :)


Zach 6 years ago

I'm 11 years old, and i have the same condition. it sucks when i am snowboarding double black runs, and i have to completely turn my head. Im going tomarrow to get a few tests to see if i might be getting surgery. I was wondering if after surgery, it still locks up, but not as much? thats what i have heard.


gabrielle 6 years ago

im fourteen and i have duane syndrome its nice to know that there are other people like me.

i have teh exact same issue as you. i cannot move my left eye left at all. i had teh surgery when i was three or four eayrs old and had to have it repeated last year, it sucked. but now my head is straight and im thankful!

ii have never met anyone with duane syndrome. even at my eye doctors office. my parents don't know what to do because neither of them have any eye issues. nor any of my siblings.

how can i help them understand some of the issues?


Sara 6 years ago

When I read your article I felt like I was reading my own story. I'm 25 years old and have had Duane's Syndrome since I was born, also in my left eye. Our symptoms are exactly the same. It's hard, it's unbelievably hard. I was teased constantly growing up and although i've coped with my condition relatively well, I still have to compensate in the same ways you do. Playing softball as an adolescent was the one of the most challenging experiences i've had with my condition due to the double-vision. I've had coaches who screamed at me when I swung at the wrong ball and who have tried to spin my body around because they didn't understand my stance. Since I've entered adulthood few people notice my condition but words like "cross-eyed" still send chills down my spine. I'm so glad to have found this post and know that I am not alone.


bewar 6 years ago

I have DS on my "Right Eye" and type 4 i cant move it either way left or right axxxxxxxxxxxxx i heard that people with DS on their left eye they can move it to the right just not to the left. You guys have it so much easier than me. I heard there is going to be a cure for this down the road. They have tested someone somewhere i read online don't really remember but it got fix not all the way but much improvement.I cant wait for the day to come....I know all of us with DS cant wait.


Sandyspider profile image

Sandyspider 6 years ago from Wisconsin, USA

Interesting hub. I never heard of this before.


krissy 6 years ago

i have duanes syndrome but when i was younger i had surgery so no one ever really can tell. In high school some people did notice and say things like "whoa your cross eyed or whoa thats so cool" haha but it just made me feel really self conscious. i hope one day there will be something to fix it i honestly want to be able to see to my left...hmm i wonder what its like


Laura 6 years ago

I'm a 43 year old woman that was diagnosed with Duane's when I was a year and a half. I was told there was nothing to be done. When I was in my mid-thirties I found a Yahoo group dedicated to Duane's. It was the first time I'd ever encountered anyone else with Duane's. And that was where I learned about the eye muscle surgery. There I also learned that you HAVE to go to a pediatric ophthalmologist who specializes in strabismus disorders (even if you're an adult!) It seemed odd to go to a kids' office with all the toys and stuff in the waiting room, but they are the ones who know about Duanes. I was so glad I went! I went to Dr. Joseph Calhoun at Will's Eye Hospital in Philadelphia. (Sadly, I recently found out he has passed away.) He was terrific and performed the surgery just a couple of weeks later. It made a world of difference. My left eye still has limited motion, but he recentered it. I didn't realize how severe my headturn was until after the surgery.

Anyway, for anyone with recently diagnosed children, please take heart. I had/have no trouble reading -- I've gone through college and grad school. To quote Dustin Hoffman, "I'm an excellent driver!" and I played basketball and field hockey in high school. I've had my share of boyfriends as well.

I've compensated all my life -- I like to get places early where seating is involved so that I can sit where I can see the most people without crossing my eyes. I've had lots of friends not realize that I had an eye issue. I had one person ask me if I had a hearing problem because they thought I was turning my head so I could hear better! So while I'm a bit self-concious about it, most people don't notice.


Sm 6 years ago

I have DS too. I've had it since I was born. I'm turning 18 soon and i've been threw 4 surgerys to fix my eye but it looks alot better then before but it still points down. I have a very low self esstem because of it. I'm afraid to look at people when they talk to me. I've been teased about it my whole life, even the people who were supposed to be my friends would bug me about it. And my eyes are to small so I can't even wear contacts so they also used to tease me about my glasses so I stopes weaaring them and started putting my hair over my eye. It's the only way I'll go in public. I really hope they have something to fix it completely soon,


MR 6 years ago

Your story sounds exactly like mine. I'm now 47 and feel like it's getting worse. I do have problems with my neck due to my head turn. I had surgery about 5 years ago and my eye too returned back to where it was. There is another surgery VRT(I think) that I am interested in looking into. Anyone have any experience with that and who was the doctor? I have lived a happy successful life, have 3 children (who do not have duane's), but lack self confidence due to be called "cross eyed creep" when I was young. I did learn to compensate and many people are surprised when I tell them I have a problem with my eye.


alice 6 years ago

my left eye is crocked and it is not in the center im 5 years old and my sister wrote this for me and i am special for my eye


will 25 6 years ago

i have ds and my right eye starts to wander when i drink why is that . i notice some girls making fun of me at a bar one time blinking one of her eyes like ten feet away from me idont know if she thought i wouldn't notice or what iknow she was making fun of me though .it really makes me angry people can be so ignorant as to something you cant help.they were kinda chunky and cant get laid iswhy im guessing. still burns me up though they don't even know me and they do stuff like that.


Kim 6 years ago

I have recently learned that I have DS. I was born with it and when I was 3 years old my parents paid for me to get the surgery done. When I turned 13 I found out that I no longer needed to wear glasses and that my vision was 20/20. To this day I am 27 years old and so far I have no vision problems yet. However I do get pink eye often and it's always a severe case, but on the bright side I have perfecrt vision. So I just want to say good luck to all you out there and I hope that things work out for you! I thank god everyday mine got better and I hope yours does to.


Caitlyn 6 years ago

I have duane's too in my left eye and can't turn it to the left. I got good at compensating with the head turn but its still annoying. There was a comment "when people say cross eyed it still sends chills down my back" i feel the same way. and I also work with children and sometimes they notice and they'll say something like you're eyes just went crossed, haha, i always looked at them like i'm confused and respond "no they didn't" haha and then forget about it. I've been recently looking into information about surgery, but does anyone know if they're is anyways that they can gain they eye moevment back?? also my eye moves a little to the left but only if im glancing up too. does that happen to anyone? i hate in pictures because i notice my head turn so bad and now with facebook and everything....for the people who are worried about driving, you learn to deal but they have those circle mirrors you can buy for about 5 dollars and it helps check your blind spot. i also hate when i'm in the passengers seat of someone's car and we're having a conversation and they glance over to make eye contact, because I never look back at them, or if someone is one my left at all, but the car is more obvious because you have to turn your head like all the way to left and it just dosnt look or feel normal. But a lot of my friends don't even know that I have it and it is fun to do to little babies and confuse them. Does anyone have any information about one eye getting weak because you focus so much out of your other eye? I feel like mainly use my right eye to look at things.


sarah 6 years ago

so funny, i'm nineteen and have had this my whole life and until after reading these never realized I couldn't see 3-d things!! and that also made me think of those picture where u start really close to the picture and move it away from your face and theres a hidden picture, and I can never find the oicture, wonder if it has any relation.


Kaitlan 6 years ago

Thank you for this! I am 15 years old and have also Duane syndrome. I was nervous about my surgery coming up in June so i decided to do some research. But when i look straight ahead, i don't seem double? And my left eye is cocked all the way inward. But once again, thank you!


Bewar 6 years ago

OK everyone I im having that surgery that I was talking about for much improvement about 92% will be cure. Surgery date is June 4th 2010. I will go a week before the surgery for a per up appointment. I will get all the information on this who ever is interested in. Just add me on facebook I will keep you guys updated on that. Facebook email is: bewara2009@hotmail.com


Nicole 6 years ago

It's fantastic to read about other people like me with Duane syndrome I never knew there were so many people out in the world. I have lived with the condition for 16 years now and when I was little I used to walk into doors and tables because I was unable to control it,I am now very content and I think it's starting to grow on me :)!

I have the same problem as the writer of this article.It is my left eye that is affected and I have to constantly turn my head which is a constant pain. I have had headache for the past 3 weeks and I think it's to do DS because I have had a lot of early nights and although I am revising for my GCSE's I am not stressed so I don't think it's that.Any one have any thoughts on this?

I have one last question... when anyone is tired does your eye start to wonder to the left corner( if you have DS in the other side) . thank you for info :) much appreciated. any answers email me. nicole.stringer@gmail.com


Lisa 6 years ago

I am 40 years old and have ds in my right eye. I have compensated by turning my head to the right for as long as I can remember. I was diagnosed with this as a baby. I haven't had any trouble until recently when I began having extreme neck pain on my left side. A physical therapist that I have started seeing feels that my neck issues are due to my over-compensating. She has given me exercises to do to help remedy the problem. I hope it helps.


Rochelle 6 years ago

My daughter, who has DS, is 6 and learning to read. She covers her "bad" eye with her hand when reading because she says it helps her keep her place in the book.

My question: Will covering the eye weaken the muscles of the DS eye? Should I get her an eye patch to help with reading or discourage her from covering it?

If you have DS and any advice, I welcome it at rtortorete@hotmail.com THANKS!!!


Megan 6 years ago

Hi, I'm 14 years old. I have Duane Syndrome. I hate it so much. It's in my left eye. And i have trouble looking left. My eye is also off center & only goes to the right sometimes. When i was 3 or something, I had a surgery which gave me 50% of my vision to the left. But not all the way. It's gotten worse over the years. I NEED another surgery & soon. Because Duane Syndrome makes everything harder.


Rupert Pupkin 6 years ago

Hi, I'm Rupert, 26 in the UK.

Just wanted to add my voice to those saying how they enjoyed seeing a run-down of your experience with DS, OP, and also how great it is to see so many people contributing their own, in the response thread.

as the proud owner of the rare, and largely benign condition, i've always thought it would be good to have a club for us all! i guess this is as close as it we might come...

it seems the condition might be a spectrum, i feel i must be one of the lucky DS sufferers, as i haven't had much trouble with it over the years. only occasional annoyance, and never being able to see a damn magic eye picture! so far, i've been ok with 3D though!

also, some recent anxiety. i was unconscious to it mostly, never recalled it, just turned the head when needed etc, until now at 26, i broke up with a LT girlfriend, and started getting vanity about it, and worried it is a big thing, which i think the replies here mostly prove it isn't.

for those who need surgery because of migraines etc, i hope they go well! i get dyplopia but not the migraines, and i always forget to arrange my seat at a dinner party to have the most interesting (and cute) person (girl) on my right, for ease of use... i often have a little 'damn it!' moment instead.

thanks again OP, nice to hear the experiences of everyone. take care, brothers and sisters!


Crystal 6 years ago

My 9 year old daughter had DS in her left eye also. We did surgery to weaken the nerve on the inside of the left eye to make it quit pulling in. We are worried right now that she is not seeing well because she has a lot of headaches. Have you dealt with a lot of headaches?


Guest 6 years ago

Hi Im allmost 19 and have been in and out of doctors offices since I was 12 trying to figure out why my left eye wouldn't move like my right. However the doctors are still not sure if I have dwanes because I don't have all the symptoms and never experianced the same things as everyone elce posting. From the sounds of it I got off lucky because I can look strait and see fine but I can't look arround without seeing doubble. My left eye won't move up, but it's not really noticeable unless I look up. I plan to get genetic testing done soon to get a diagnosis. Thank you for posting your experience :)


Kaisee Martell 6 years ago

Wow..i didn't know so many ppl had myu same condidtion. Im 13 years old and i was born with this too and my doctor and all my friends think it lazy eye i get teased all the time...what can i do to cope with this frustating eye condition?


Kate, UK 6 years ago

I have enjoyed reading all the comments! I have it too - I used to 'play' with the double vision - you can make things appear and disapper like magic. I thumped a kid that made fun of me in primary school and don't remember ever having any other problems like that, but totally identify with the neck turn, awkwardness talking to someone on yr left, back problems etc, being very very careful driving... I definitely have a blind spot from duanes as well as the double vision, it's exactly where people put their hanging baskets and I am reknown in the plant loving area where I live for walking into them.

In the last 10 years I have had a bizarre range of other health problems, mainly endocrine, and also fainting, which despite a week in hospital and various consultants no-one can seem to get to the bottom of them. I take various synthetic hormones and am reasonably well (well enough to work full time) but I have been told there might be some links to the duanes.

I also have hearing sensitivity and slight malformations of feet and spine. I look fine though apart from the cross-eyed thing if you are on my left, and have always felt pretty lucky compared to a lot of people. And smug about the 20:20 vision even though I am 40 (I think good vision is a reasonable trade off)

If anyone knows anything about linked conditions I would be very interested: katesabout@yahoo.co.uk and I will email Cortney too (see above, 10 months ago)

Good luck to all you fellow Duanes! I have never ever met anyone else with it!

Kate


martina 6 years ago

THIS HAS BEEN SUCH A WONDERFUL SITE, MY LITTLE NEPHEW IS 18MONTHS OLD AND HAS DS, WE ARE JUST FINDING OUT WHAT THIS ALL MEANS AND SO SCARED FOR HIM. ITS GREAT TO HEAR ALL THE WONDERFUL STORIES, MY NEPHEW LIVES IN IRELAND AND IT SEEMS EVERY DAY WITH EACH DOCTOR THEY FIND A NEW PROBLEM. DOES ANY ONE OUT THERE HAVE HEARING LOSS ASSOCIATED WITH DUANES OR OTHER ASSOCIATED SYNDROMES, ANY INFORMATION WOULD BE REALY HELPFUL.


Mindy 6 years ago

Reading all these comments about DS has been very interesting. Thanks to the original poster for being brave enough to post on this. I too have DS. I am now 28 years old, diagnosed when I was an infant and had surgery when I was about one. I do not know what it was like before the surgery, but I hear that I could not control it at all, I mean I was only an infanta at the time. I never had double vision as some others did. DS affects my right eye and whenever I look to my left I have to turned my head, as my left eye goes left as it should, but the right eye trails off looking upward. The only drawback for me has been the name calling in lower school and maybe early middle school, in high school people tended to grow up and not be so mean. Most people don't even notice now, or at least they are polite enough to not say anything. Sometimes if I don't pay attention and look left without turning my head, then I can feel it wonder, but it doesn't happen very often. It's learning to control it. I played softball and soccer in school with no issues. I'm a runner now, just ran my first marathon this year. I am a college grad, work as a respiratory therapist in a hospital, my job is a critical role on the code team and trauma team, so as you can see it really doesn't affect your day to day life, past lower school that is. I agree with someone else's post that just love your kids diagnosed with DS and they will be great.


kristin 6 years ago

I have Duane Syndrome too and it is actually really, really comforting to see that there are other people who have this problem. I was also made fun of when I was younger which is unfortunate. Anyways, thanks for all the comments! This really helped me!


David 6 years ago

I just had my second DS surgery on the 4th of June 2010. Now from what I see, My right eye(DS)is centered my head is straight. Now for the bad news I see double vision and my eye socket went in more I don't know if that is normal or what? or is it due to the swollen of the eye. Also My right eye is very sensitive to the light inside and outside still. All this happened after surgery. Now it's June 11th 2010, I my head is slowly going to the left again and my right eye is still centered and it looks very weird now. I try not to get use to it. I try to keep my head straight. That is the only change I see now. I go back in 2 weeks for a check up. Now I I'm having second thoughts that I shouldn't had this surgery cause of the the double vision and the eye socket going in more etc. Before I had this surgery I was better of looking like that than now. I don't know maybe all this is normal and I just got to let time heal it self. My doctor did say to me before this surgery that it will take longer to heal and that I would feel more symptoms. I will keep you guys updated on this.


MLee 6 years ago

My son was diagnosed last year at one year old. I was wondering if any of you had reading problems early on. His ophthalmologist so far has checked him twice and his eyes are centered when looking straight ahead. His is in the right eye.;


ledizzle 6 years ago

I have this and causes slight double vision but i can establish whioch is real and not ... will this affect me joining the army?


Jessica 6 years ago

Hey, I also have Duane Syndrome. My eye does not move to the left...but i have no problem at all. Maybe i have grown to get used to it. When i was about 4 or 5 years old i had surgery to align my eyes so i would not see double, and i don't. I can see perfectly well and my prefixal vision is wonderful. I guess it is just case by case [: Also, my eye that is effect by Duane syndrome is my strong vision eye[; I loveeee when people notice I can't turn my eye, I like educating them [:!


David 6 years ago

Got back from a check up after surgery. Everything I was going through it was normal he said. So good news. The double vision went away. My eye is still in the process of recovering for another 2 months he said. After 2 months My eye will open up all the way and my right is will be center . I never knew it takes time for the muscle of the eye to pull in the eye back.


leddizle 6 years ago

will this affect me joining the army?


teresia cruz 6 years ago

I just found out today that my only baby has duane syndrome. Is my son going to be able to have a regular life? Is my son going to be able to play sports does this progress and get worse? What can I do as a mother to help him in anyway? Please email me with any information that can help me....teresiacruz@yahoo.com


Hays 6 years ago

Leddizle

You can read my posting further up the chain. My advice is to try and take the physical, but DS kept me out of the military in 1996. Things might have changed since then. If this is something that you really want to do and don't feel that it is very noticeable, don't tell them, make the doctor find it. Good luck and my email address is in my posting that I submitted nine months ago if you want to talk more about it.


Kayls 6 years ago

I got really excited when I read this, because I'm 15 years old and have DS. I struggle with a lot of the same problems you do, except mine is my right eye not being able to turn to the right. I also can't see with 3D glasses, and have been called cross-eyed by my classmates before. I feel like I know you already, haha. Thanks for the good read!


Luzry 6 years ago

My 9 year old son has Duane's on his right eye and can't turn it to the right. Duane's is one of several other congenital disorders he has. He was first diagnosed as having pseudo strabismus at 9 months. Then at 1 1/2 he was given the correct diagnosis. While playing he bumps his head more than the norm so based on some of the things I've read above, he probably has a blind spot as well. He sees double when looking straight so to compensate he slightly turns his head. No one in my or my husband's family has this condition. I have a daughter as well and she doesn't have Duane's either.

According to what I've researched, Duane's happens due to the person congenitally missing an ocular-cranial nerve. That's why surgery can't cure this disease. Surgery can help with stretching certain muscles or centering, but it will not restore normal movement.

I am at peace with what I've been given as a mom to deal with the conditions my son has. Even though he has several medical challenges, his are mostly mild. I tell him whenever we talk about it or he's teased about his medical problems that he could've been much worse. That he should not feel bad or sorry for himself and to enjoy, love and live life to the fullest.


Sam 6 years ago

Thank you so much for posting this and thanks for all of you who have shared their experiences. My son, who is now 8 months old, was diagnosed with DS a month ago. His pediatrician didn't notice it but I did (I am a physician). We then took him to a pediatric strabismus specialist who diagnosed it. I didn't have very helpful information in the medical literature, except that there is little to be done and I freaked out from what I read on the web (I am not an eye doctor)BUT this post, from actual people with DS, has helped a lot because it answered so many questions about school, sports, dating, driving, etc. and it seems most people are well compensated, although I also understand it could be challanging for some because everyone is different. Thanks to all for posting your experiences.


swimgirl14 6 years ago

Hello,

I'm 20 years old and have been living with this condition practically my whole life, I was diagnosed with it at the age of 4, when my preschool teacher noticed it and informed my parents of it. I too was teased as a child, because if i stare at something or someone for too long, my eye (i have it in my left eye), does seem to wander. and yes, a lot of people do mistake it for lazy eye. Which was disheartening having to explain over and over. However It was interesting reading about your surgery, I didn't know they had surgery to correct this...I'm sorry it didn't work for you! I also have long distance vision troubles, and if i did get lazer eye surgery, it would be to correct that first. Driving was difficult at first, because i have to turn my head to check my blind spot and merge, but my glasses have a prism in the left lens to help me a little bit. Other than that, I haven't been to affected, some people actually think my "eye trick" is cool. Which is great. my mom said when i was little i used to do it from across a table to mess with people at dinner parties and family dinners. Advice to any one who has a child with this syndrome, to tell them that it can be used as an advantage or a cool quirk. My parents never treated it as a huge disadvantage so i never believed it to be one. Thanks for this article. Cool knowing there are others out there who manage this as well!


Curlicue 6 years ago

Unbelievable! I'm 61 and was just diagnosed today. As a child, I was told that I had paralysis in one eye due to problems from a forced birth. No doctor has diagnosed it until today. One eye doctor laughed when he asked me to turn my eyes to the left. I was very young then and too intimidated to walk out the door. I even had surgery for Graves disease; and the eye surgeon did not diagnose it, although he thought the decompression surgery might correct it. It didn't.

I went through the "cross-eyed" name calling when I was a kid and my mother worked with me to learn to turn my head so no one would notice. i remember hating it when I was young. I don't think about it much any more. Someone had the foresight to teach me to turn my head back and forth slightly and use my finger on the page when I was learning to read so the words didn't blur. I've never had a problem reading since. I still walk into walls and lose my balance sometimes if my focus or concentration is off. I do have the blind spot. I've had problems my whole life with hand/eye coordination, but that has not stopped me from being an athlete. I'm a long distance cyclist and an avid hiker. I do have to rely on help turning left when I'm on my road bike. Tennis is out of the question. Driving has never been a problem. If you throw a ball at me I still hold my hands over my face because I can't tell where the ball is. I can't thank you enough for the post. I feel almost normal.


Matt S 6 years ago

Hi all, my 5 year old son has DS he's a great lad and makes us laugh by doing things with his eyes I don't know if he's getting stick in school about it, he has never mentioned it although he is quite shy at times and probably wouldn't say anything. The thing is he loves soccer (Football here in UK) and will soon be playing in a team, he is very good with a ball. As I don't know much about DS I was wondering if anyone could tell me if he would cope with it competitively in the years to come as the lack of peripheral vision may hold him back and it would break the lads heart.

It's been interesting reading your storys as my son has all these experiences too come. It's comforting too see that he's not alone though.


Daniel 6 years ago

If i may correct you i have duane syndrome and there is a sugery that i had it does not cure it completely but it help very much i had my sugery done at the Bascom Palmer in miami fl and i have been able to move my right eye outwords i bit you should check it out.


Krista  6 years ago

i was just told i have it still try to understand it


Jasmin  6 years ago

I am finding all your stories very informative. My son is 3 yrs old. Both his eyes are affected. When he was younger I didn't notice how crossed his eyes were, however now when I look back at the pictures its quite evident. He tilts his head down to look at things properly. We saw two doctors in regards to it one said Duanes Syndrome, another said Ocula Fibrosis Syndrome - has anyone had similar diagnonsis? Also to you all try reflexology or other natural therapies to help with condition and also the neck pain etc - after the first reflexology treatment my son had it really helped and his eyes didn't seem as crossed.

I would love to hear from anyone who has both eyes affected to be aware how you cope, so I can help him in the years to come. Thanks


ifat 6 years ago

Hi

Just found out my 1 yr old has DS in her left eye, it seems she can look to the left but not all the way, does it get worse in time ?


Warren 6 years ago

Finally found others with DS. I am 57 and am afflicted with bi-lateral DS. Having read this and dealt with similar experiences I wanted to say that it has never affected my driving. Although it poses some social awkwardness I have had a succesful life and never let the syndrome inhibit me.

Good Luck to all of us!


Jim 6 years ago

The only thing to do to get the best result is having surgery not just one. My friend has this and he just got his 5th surgery and its looking better than ever. I mean no he is not cure all the way and we all know that there is no cure out yet. He is only missing 5%..So after 5 surgery he is 95% DS free :) woow. So to all you people with DS good luck.


Clare 6 years ago

Hey, Im nearly 16 from the UK, and I have the type 3, tis rly annoying sometimes, but you learn to live with it. People can be soo mean! I was wondering if surgery's worth it? and seeing as this is a congental condition and is hereditiry, I am wondering if anyone knows that duanes will be carried to my offspring? this is a thought that scares me. If so anyone considerd screening? and i was wondering if there are any furtutre problems that may occur with life struggles like driving, being a slow reader- affecting exam progess,etc? and these neck problems seem a bit scary.

Ah its nice to feel not te only one :)Thank- You! Btw can someone, anyone help answer these troubing questions, tyx


leah 6 years ago

i have this too. I hate it it makes me very self contious!! im actually jealous of those who seem to be fine with it. I hate it!!!! i would do surgery in a heart beat if it worked!!!!!


minimoe17 6 years ago

I am fifteen and I have duane syndrome. I would get made fun of all through middle school and it was very hard to cope with. I am in high school now and no one has brought it up as much, but I still remember all those cruel things said. It is hard to live with and I always get head aches from using my right eye so much. I have had the surgery twice and it was the most pain I have ever been in. I also hate it cause everyone just calls it a lazy eye, but it is way more complicated than that. I wish people could be more kind because all that stuff said to me really hurts and will live with me. Thanks for writing the article. As I get older maybe I will be able to deal with it better.


di 6 years ago

I am in my late forties and have DS in my left eye. I turn my head slightly in order to see straight ahead. This does throw people off when I am wearing sunglasses...I find them looking over their shoulder to make sure I am not talking to someone else. Nowadays, I try to turn my whole body slightly to the left so that I can look right when speaking with someone. My right eye has become so dominant that I rarely notice any double vision because my brain just blocks out the image in my left eye. It is actually pretty fascinating how the brain does that. Unfortunately, not noticing the double vision does not mean I am not crossing my eyes, it just means that my brain is not registering images from both eyes so I get a little paranoid about how I look. In the last few years I have learned to use a "pretend to rub my eye" move which allows me to briefly cover my good eye as I adjust my head to be looking as straight as possible without looking crosseyed.

For parents of children with DS - one of the best things my Mom taught me was to always sit on the left side of the room so that I could be looking right most of the time and wouldn't look cross-eyed. Each year she would send a note to my grade-school teacher and ask that I be seated on the left side of classroom. I still remember this every time I go to a meeting, church, long dinner table, etc.

As I grow older, my weaker DS left eye is becoming more near-sighted while my right eye is becoming far sighted. As a result, I am one of the few people my age who does not nead reading glasses. My left eye is finally pulling it's weight and compensating for the right while reading up close. See, you wait long enough and eventually the silver lining becomes evident :)


Christina P. 6 years ago

Hey, I was born with DS but when my parents would talk about it, I never felt like I had a birth defect. I cry when someone says to me, or asks me if I'm cross-eyed or that I have a lazy eye. Sometimes I forget I have DS but I hate it when it comes to taking pictures b/c my right eye looks a little smaller than my left and when I smile and take a picture it looks like I'm winking. Thank goodness that the Elementary school that I went to didn't have kids that made fun of me. I was know as the kid that could do a cool trick with her eyes but when I attended middle school, I became self-concious about me having DS. Only a few people that I talk to know about my DS. My first year of High School is in two days and I'm not sure that I want people to know I have DS. They can be mean to me about it or who knows, they can be actcepting. Twice I've been called cross-eyed and I wanted to cry like a five year-old and say I'm not but there are just ignorant and uneducated people out there who will judge you before they even know you. I just hope that my DS won't be more noticable than it is now. I'm going and so is the rest of me, but my upper right muscle to my right eye is getting more noticable than it was when I was nine. I'm just happy that makeup was invented b/c when I put on mascara I can barley tell I have DS.


Jim 6 years ago

If you have esotropia or head turn in the primary position, the best correction is VRT surgery.I had it done at UCLA and it was successful. VRT is Vertical Rectus Transposition.You can learn more online.


Ivey 6 years ago

I am so happy that I came across this page. It's wonderful to see people coping with this disorder so easily. My daughter was diagnosed with Duane's syndrome last week. I've wondered if there were any treatment options as the eye doctor said there was no treatment unless her eyes went in different directions. I don't think i would chance anything with surgery. i wouldn't want anything to go wrong and her possibly becoming blind. Although i do worry about her when she gets older. I know that other ids will pick on her but I was wondering the best ways to show her that it's ok to be different. I still have a while to figure it out as she is only 10 months. I ahd never heard of this nor had her pediatrician... Thank you for blogging and putting this helpful information out here for so many of us to use! Best wishes to you!


Suki Highers 6 years ago

My son has bilateral duane's syndrome and is really struggling with reading and writing in school. I haven't been able to find any specialists in Northwest Arkansas to help him. I wish that there was more information out there to help parents who don't know how to help their kids!


Sandra 6 years ago

Suki, my 11 year old has just completed a Wilson Language reading program with a tutor that is typically used for kids with dislexia. He is a good reader now. (by the way he really hates to read!)

Maybe you can make or buy a tool that would help him when reading, like putting a ruler under the line he is up to. I have seen some colored plastic ones too. You can email me and I can explain what it is a little better.

Keep up the search for an ophalmologist who knows more about Duanes. My father is an eye doc and he noticed it in my son at about 2 months of age! My pediatrician is familiar and interested about Duanes. You might have to travel, but if it will give you peace of mind to speak to someone who can answer all your questions, then I am sure it is well worth it. sanvoynow@comcast.net


jim 6 years ago

I wish their will be a cure for this...i have a question the eye that is effected with ds does that eye goes in more than the normal one eye?


Evan 6 years ago

I'm 19 and I have DS in my left eye. I've been compensating for it for as long as I can remember, so I haven't had a lot of issues with it. It was only in recent years (16 and onwards) that I started feeling self-conscious about it. The only time it bothers me is when I try to look to the left. If someone is sitting to the left of me while we're talking I'll either tilt my head towards them but keep my eyes looking in front of me or squint my left eye so I'm not looking at them cross-eyed. I don't worry about it too much around friends as most of them know about it and don't care, but I feel weird knowing I'm giving a total stranger the crazy eye.

I only ever met one other person with Duane Syndrome, when I was about six. It's way cool to be hearing about everyone's experience.


reney 6 years ago

my six month old was diagnosed last week with DS. her doctor told me that i shouldn't worry about her being teased in school and that the only way it might affect her is if she played softball or something like that. i am glad to see that there are adults who when reflecting on their childhood only remember normal teasing that kids experience. It is also neat to see the pre-teens posting. I am so glad that this is up here to get a feel for what my daughter will experience as she grows up. She is my first child, and i am clueless about how to support her (emotionally) through having DS. Hearing from others with it is awesome! I would really like to know how to acknowledge it in a way that it doesn't make her self conscious about it, but instead confident and not really caring about what others say. Any suggestions?


josie 6 years ago

Duane Syndrome and finally at 55 had eye surgery. Does not correct as we all know but does help. Left eye DS and it is perfectly straight as well as my neck -finally! I am conviced that tilting the head to compensate for slight eye inward caused neck/shoulder issues and headaches. I am happy I finally did it and just know that everyone is different and when the time is right, the right decision with the right physician will arrive. Also, recently found out there are different types of DS and I'm lucky the one I was "assigned" is type 1. life is good.


Erin 6 years ago

I have this syndrome too, & my only concern is how i go about telling my boyfriend about it! I really want him to know, but I just don't have the strength to go ahead and tell him!


Anna 6 years ago

Hi, i'm 17 and i too have ds. I never knew what my condition was called till today. Like many others i was teased in primary school but in my case it was very little (thankfully). My left eye is unable to move to the left and i remember constantly trying to move the left eye to the left with all my strength. I used to cover my right eye (which moves perfectly fine) and sit in front of the mirror for hours trying to force it to move. It would only stay centred and would never move. However when i look to the right with my left eye it does move but not in sync with my right eye. I've noticed that my left eye even goes smaller when looking to my right. I will be honest, i absolutely hate it but i have learnt to hide it by tilting my head towards people so that i am looking at them square on. I am always on the left side of people because when i look to the right, it actually looks a lot worse than my left eye not moving at all. A lot of people don't notice and i'm thankful because of it but sometimes my eye would go 'out' and my friends would laugh and say your eye just went cross eyed. So not even my friends realise. The only people that know are my family, my close friends and my boyfriend of one and a half years. I'm quiet popular at school and outside of school. I absolutely love makeup and i'm the one my friends call to do their makeup for formals, parties and even debs! My sister is a hairdresser so my hair is always perfect also. I'm hoping to get into the fashion industry when i'm done with my studies as i have a talent for garment design and i even excel in art. I draw on extremely large scales which require a huge amount of detail, so my sight is not at all affected by it. I usually look at cameras on my left or straight on, to hide the disease. My life is great, i have a boyfriend who i am completely in love with and is understanding of this disease (although he has said he would have never realised). I even used to ask my sister if it looked ugly and her response was always 'i don't even remember that you have it til you remind me of it'. My parents too don't mention it and i guess i'm pretty happy. I just hope that a cure can be found cause although i'm happy it does affect me because it comes so naturally to others.


jeff 6 years ago

interesting stories all, but you never said what type of DS you guys have... they are 3 types, type 1 is worse than type 2, and type 3 is worst than type 2, so who ever has DS type 2, you guys don't have it bad as the others, that don't have type 2. I wish there was a cure for this. I think there is a cure for this but the government wont release it like other cures they have that are not going to be release. Reason is so the doctors can make money I I'm serious about this people.


Its Just Me 6 years ago

Great to read so many stories! I'm 31 and these stories could be my own. I still shudder when remembering my school days when I was often referred to as the 'cross-eyed cow'. Kids can be cruel. But that was before I adapted to life with Duanes and learnt the ways to compensate.

To Erin, a few posts above. Chances are if you have to tell your boyfriend then its not something that he has already noticed or is concerned about if he does. I've found over the years that I just call it my dodgy eye, say that its called Duanes and that it can't be fixed and I leave it at that.

If it's not a big deal to you, then it should be fine with him.

I've been with my current partner for about 4 months and I just explained it that way, and said that its easier for me to have him on my right side, just so he understood. It hasn't been an issue since.

I also have a 4 year old son, who doesn't have Duanes and I was told that it is not a condition that can be passed onto kids, so I'd be interested to hear more about that if anyone can help.

Cheers fellow dodgy eyed people, its been great to find you all!!!


Angela 6 years ago

i was diagnose with Duane syndrome when i was 1 i had surgery when i was 2. i don't know a lot about my condition but i am trying to learn more about it. i have a learning disability to so no one bothered to explain it to me. know that im older my mother dose not remember all that was told to her. do you know of any org. that can help.


Kelsie 6 years ago

When I was around 3 years old my parents started to notice that I had something wrong with my left eye. They decided that it would be best to take me to my doctor to get it checked out. At that very appointment I was offically diagnosed with Duane Syndrome in my left eye. At almost 5 years old, my eye doctor schedueled myself to have eye surgery. Which of course at the time I didn't understand the whole situation. Before the surgery my doctor warned my parents that it will not be totally fixed, just look a little better. And the doctor was right; it did turn out to look better, however it wasn't fully fixed. Which now I understand couldn't happen no matter how hard they tried.

I was also teased during school and my fellow students always called it my "lazy eye" and one student even went as far as to say "haha! you have down syndrome!" Of course at the time I was extreamly hurt by that comment but now I just ignore people if they mention it.

About a year ago I started driving and I too have to look both ways more than the normal human does. My eye doctor actually told me to look to the left last to make sure that I see the whole road. Since I have had this syndrome for years now I have adjusted to having to turn my head to see things sometimes instead of turning my eyes. However, sometimes I do get bad headaches from my syndrome from looking too far over to the one side. They usually also make my eyes hurt as well.

Today I am almost 17 years old and as the years have gone by that I have had Duane Syndrome I have learned to ignore what people say about it because there's absolutely nothing else that I can do about it. I've also learned to accept the fact that it's going to be something that I'm going to have to deal with for the rest of my life. I don't want to be one of those people that sit there and do nothing to inform people about this condition, I want to get out there and help people with this condition. Also inform others that don't have it that it's not "lazy eye" and what it actually is. I feel that I owe this to myself to teach others about it and inform them that you can live a basically normal life with it. My theory is that I was given the gift of Duane Syndrome to help others with it. In conclusion, I am proud to say that I have Duane Syndrome and without it I wouldn't be the person that I am today.


donna 6 years ago

my 1year old has just been diagnosed with ds, im so glad to have found this info as the doctors i have seen so far cannot tell me much about what the future holds for my baby, your stories have been a great help, thank you


Kat 6 years ago

I have DS and was diagnosed as a child. I am now in my thirties and a sucessful manager. People have always found it facinating and it's my "party trick". My boyfriend loves my eyes, and it has never caused me any problems in life. I drive, play sports and I can watch 3D movies. I do compensate with the head turn, but that's really not a problem to worry

about. It's great to see so many people out there with duanes and proud!


Shannon 6 years ago

Hi I am 31 and have DS. Although I cannot seem to pin point what type. It affects my right eye and when I look to the left (towards my nose) my eye rolls up and back never leaving the central position.

I have found as I get older, I am having an extraordinary amount of pain in that eye. It also is very hard to sleep at night for when I close my eyes I feel like my eye is constantly slipping up.

Anyone else experience pain with this condition?


David 6 years ago

@Shannon

I shave the same problem as you. I have pain in my right eye (DS) and it does hurt often. I told my doctor about this and he said he couldn't find anything wrong that is causing the pain. But he did say something about sinus that can cause the pain as well. So I went to see my nose doctor and he said I have sinus infection. Thinking about getting sinus surgery, so I hope that's the end of the pins I be having all the time. Shannon you should check with your doctor to see if you have the same thing that is causing the pain. Good Luck.


Brittany 6 years ago

My name is Brittany and I was diagnosed with Duanes when I was two. My parents insisted that I see a specialist when my primary eye doctor told them their was nothing wrong with my eyes. I too, was picked on all through elementary school for having a "lazy eye." I am 17 now and people don't really say anything anymore. We more or less joke about it, calling it my "stupid eye." I don't really notice anything wrong with my eyes other than when I turn my head. It is also a normal thing for me to go into the eye doctor's office and before I leave be looked at by atleast 3 interns. Having this disease has not turned out to be all negative. Through my many trips to the eye doctor it has sparked an interest for me and next year I hope to start my education in pre-optometric study, with hopes of one day becoming a licensed eye doctor.


Thomas 6 years ago

Have no fear, that is somewhat of a cure or fix, depending on your reaction to the surgury. I first noticed my son had Duane's at 11 months old. He had a slight head turn and his left eye would not look left. Immediately we went to an opthamologist to see what he could do, we were not very impressed with the doctor so we decided to google, best strabismus surgeons. We found one at Berkeley and one at Duke. Fortunately Duke was only an hour away. There were several surgeons at Duke, but the one we seemed to pick out from the online profile was Dr. Edward Buckley. A few months later we did the surgery which moved some of the top and bottom eye muscles to the outer side of the left muscle. After the surgery there wasn't much difference. 6 months later another surgery was done to loosen the inner muscle and to move the muscles in the good eye in order to prevent it from overshooting and looking to the left (to prevent crossing). After the surgury, we were very happy with the results. Although we believe in Dr. Buckley we also did a lot of praying and that it is a miracle that we have these results. My son is almost 3 and he can look left about 3/4 of the way and there is no crossing at all. He can hold his head straight and no one will ever notice there was a problem.


Jenny 6 years ago

My name is Jenny, I'm 26 and from Australia. I too was diagnosed before I was 1. I actually have it in my right eye - (I didn't realise this was so rare.) Growing up I never had any problems compensating. People rarely noticed my problem and most people who I have told about it always thought I was being polite because I turned my whole head and body to give them full attention when they spoke to me!

I have found that I have become more concious of the problem as I have got older and I now am much more aware of my head turn. I was wondering if anyone has found that their eye has become less mobile over time. For example, I think I my right eye was always a little off centre but now it feels like it has become stuck slightly further to the left. I had started to worry that over time it may end up being completely stuck to the left. Has anyone experienced this? Was surgery the best option??


Scott 6 years ago

For those who have a lot of problems and are getting worried about their condition and never had surgery before. I have to say go for it go get surgery you will look much better than before. Surgery is the answer to everything I mean yeah of course it wont be cure but, "better"


Scott 6 years ago

For those who have a lot of problems and are getting worried about their condition and never had surgery before. I have to say go for it go get surgery you will look much better than before. Surgery is the answer to everything I mean yeah of course it wont be cure but, "better"


Megan 6 years ago

I have Duane syndrome also. I had the surgery when I was 2 yrs old (I'm 13 now). most people just think it's a lazy eye. I don't really get offended or upset when people ask me if I have a lazy eye but I hate picture days. My Right eye always seems smaller. Seeing double and turning my head is kind of annoying but it's not too bad. I never really realized it was so rare but no one at school has ever heard of it. Last time i went to the doctor I had type 1 but I have not been to the optometrest in a while. It's great to hear that people have perfectlly normal lives with it. I was a little scared it would affect me later. Not very many people mention it to me except maybe once. I also read that there were glasses for the head turning but I don't know if they work. Hope there will be a cure.


Alina 6 years ago

Hiya

Nice to see there's a bunch of us here! lol. I am 36 and have DS too (left eye) - I can relate to many of your stories, with similar experiences growing up etc. I am finding as I am getting older that my eye is getting considerably smaller than my 'good' eye, I guess I am losing elasticity in my skin and my eye-lid is dropping. I recall as a teenager, my Opthamologist saying something about possibly having an eyelid tuck when I was older for cosmetic purposes... I wonder if this is what he meant. My eye gets quite achey sometimes also - like a dull throb in the socket... particularly when I'm tired. I have a slight tilt to compensate. Funny when I look back at school photos and recall trying to 'look straight' as instructed, but seeing that my head was slightly off-centre! I have little/no 3D vision, can see round corners & under the bed (party trick) and have found this has sometimes affected my balance. Have broken a toe walking into the door jamb when I got up in the night - eyes blurry, vision out - crunch! And the other night I was baking and not conentrating and cracked the egg open on top of the stove instead of into the measuring cup next to it! Sometimes things just aren't where they seem. All in all, it's just something we live with. When people ask "Why are your eyes funny?" (and they do ask - I'm a teacher so I guess it comes with the territory), I often reply, "Mine? Mine are normal - what's up with yours?" hehehe.

Interested to know if anyone else has the eyelid thing happening?


brandon 6 years ago

good article.

DS doesn't bother me too much. I just don't like the neck pains/ tension. I bet I'd be 10 faster at reading with out this sorry syndrome.

Internet brings DS people together.

Btw, I read someones post in the beginning about people being rude to people with DS. Yeah, just ignore them. Ignorance is everywhere, makes me sick.


brandon 6 years ago

reynolds, fwiw you are hot.

im in college so take it as compliment.


Tia Martinez 6 years ago

I have Duane Syndrome. And I never really knew what it was. I just started doing more research on it. Im so ashamed & embarrassed....inever take off my glasses or talk to anyone about it. I just say I was born this way.

It's glad to see there are others like me. And not alone to talk about it

:)


lisa 6 years ago

my son logan is just 5 he was 30 wks premature he until now had no problems with his eyes until a teacher noticed after lunch he was rubbing his head alott and just sat there a wouldn't dono work he wouldn't look at her he allways leans head to left or right side wen watching tv or reading today i was told both his eyes are the shape ov rugby ball im so confused he going hospital soon and is waitin for his glases this week i feel so bad i didn't notice hes so smaland never complains xxxxxxxxxxxxxxx


Roxy 6 years ago

Oh I loved reading your article. Im 21 and have DS too.


Tammy 6 years ago

I was so glad to come across this article! I've never personally known of anyone else to have Duane's Syndrome, but knew someone had to for it to have a name. It truly makes me feel better, knowing I'm not the only one! I am in my mid 40's and have lived with DS all of my life, although I didn't receive a correct diagnosis until my late 20's. As a child I was treated as if I had a lazy eye. I've learned my rare DS is even more complicated than most, I am missing 3 of the 6 muscles needed for movement. I am near-sided in one eye and far-sided in the other, but I am also considered legally blind in my right eye without any prescription and have absolutely no peripheral vision on the right. (which has been the cause of a few fender benders on the rear passenger side of the vehicle I was attempting to park or back up!) I started wearing glasses when I was 16 months old after my parents noticed I kept bumping into things and actually walked straight into a wall! Part of the lazy eye treatment was when in elementary school I had to wear a patch over my good left eye to supposedly strengthen my much weaker right eye. It was miserable torture! I remember crying and begging my parents not to put the patch on, but they were just doing what they were told by the doctors and thought they were helping me. At one time I also had to wear special prism glasses that just made me feel sick and gave me headaches, but the doctors thought that would go away given time...it didn't. To this day if I have any prescription made into my right lens it makes me physically sick. I was made fun of at school, called crossed-eyed or 4-eyes or whatever name the mean kids thought of that day. I learned to tilt my head to stop double vision and to turn my head to the right or move my whole body when looking to the right to keep alignment and avoid the crossed eye look. Sometimes even now, when watching TV or if I'm tired, I'll realze I've turned my head pretty far to the right and lowered my chin almost to my chest to concentrate on what I'm looking at. I can't wear contacts because of the sunbursts I see radiating off of any light. Darkness makes this much more significant. I am not a candidate for vision corrective surgery in my left eye because I'm considered to have monocular vision even though I do have a very small amount of vision in the right eye. I can't have my right eyed repaired because the required muscles are missing. I am the only DS patient that my current opthalmologist has and he is fasinated by whatever I can tell him about my eye and the treatments I received as a child, he says everyone meant well, but there just wasn't much known about the condition and wrong diagnoses were often made. Another weird symptom I have is when I do cry, it's only out of my left eye, the right one doesn't make tears...however, sometimes when I eat it will water. Strange, huh? Fortunately, my children didn't inherit this syndrome and hopefully my future grandchildren won't either.

Thanks for the article, I loved reading it!


VI Teacher 6 years ago

What educational needs do you think need to be addressed in the school setting for students with Duanes syndrome?


Anon 6 years ago

To VI Teacher: I don't know if this is much help, but I always have to sit in a certain area of the classroom so I can see the teacher properly. Ask them if they have an area they like to sit in.


Welshi 6 years ago

Hi, I am a 26 year old woman from Wales. I have had this condition all of me life. I can not look left and when I look right my eye turns up (left eye). I did get teased in school for this, but only up until a certain age (think it is more down to children finally maturing and not finding teasing as amusing as they once did - they'll always find someone to tease about something).

My eye is very noticable. When I first meet people they notice there is a problem with my eye straight away. However this is down to the left eye being much smaller than the right. I'm not sure if this could be corrected with surgery?

The size of the eye is the only thing I wish I could change, the lack of movement does not actually bother me. I now teach 16-19 year olds and not once have they ever brought it up in lessons. I am quite happy to talk about it though!

For anyone who may be a parent with a young child with the condition I would just say that this condition has never once stopped me from doing anything. I have a Law degree and Postgrad, PGCFE, Successful teaching career, applying for my MSc at the moment and I had the confidence to fly over to Australia on my own to travel for 6 months. I have a gorgeous boyfriend and a very active social life.

Anyway I just wanted to share my experience with this condition. Any questions feel free to ask! x


Tricia Taylor 6 years ago

Thanks for sharing. I also have Duanes syndrome and have struggled mostly with the cosmetic aspect for years. I am now 30 and am looking into having the surgery because I am experiencing migranes from having to use my dominant eye so much... I work evenings in a hospital and when I get home, sometimes my eyes are so tired that when I look at the alarm clock, the numbers actually bounce up and down. It is so frustrating! I worry about driving as well and have twice ran the side of my car into the pole in my parking garage! I almost failed the vision test when getting my driver's license renewed because, as you say, I cannot see things with the affected eye when the working eye is not covered up! I also have a tendency to run into things on the one side because I cannot see the periferal at all. I'm am praying that my insurance will cover the operation so I can have atleast a little relief!


Tricia Taylor 6 years ago

Alina....

I also have the smaller eye/ eyelid prob


Rac 6 years ago

My 13 year old daughter was diagnosed aged 3 and up until now it has been a bit of a party piece for her but now she's studying hard at school, trying out new sports and wearing makeup it's becoming a real annoyance for her. She's getting very frustrated at not being able to see in the mirror to apply her foundation and as for trying to teach her to straighten her hair - forget it!!! Tears and tantrums! She has the condition in both eyes and is now starting to experience more double vision than in previous years. I thought that she may just becoming a little lazy at moving her head...but maybe someone out there knows different?!?

She started wearing glass for distance last year but this is only a weak perscription. She would love be be able to 'talk' to someone with the same issues as her, becuase as you can imagine 'I just don't understand'!!


Dorothy Lynda 6 years ago

Like so many of you, I find it comforting to "meet" others who have Duane's. I turned 40 this year, but only a year ago learned what it was called. Had surgery at age 2 or 3, glasses all throughout school, but in uni the doc said that I'd be fine without them. I feel that since turning 40 my eye (L unable to turn L) is turning in more and it's becoming more of a strain. I reside in Sri Lanka (although Canadian)--any tips on specialists in this part of the world or in Canada? Would appreciate it: prabodee@yahoo.ca)

Parents, please do find out as much as you can about the syndrome and coping mechanisms. I went through the same painful teasing and thought that I was ugly and stupid for my whole youth. Practical tips such as turning the head to look left or right, depending on the affected eye (as soon as a child can understand this) and also smart return-comments like Alina's above (wish I thought of that when I was in primary school! : )) will help to reduce unnecessary barbs. I've been blessed with a full and interesting life so far: higher education, extensive travel, driving (even in crazy South-Asian traffic, with two preschoolers in the back seat!), lifeguarding, swimming and swimming instruction, and have grown in spite of-or because of-Duane's. Thank you all for sharing.


Sharon Hiebner 6 years ago

I have just been diagnosed with this condition, perhaps not as severe. I have worn glasses most of my life, and non of the opticians I have seen have picked up on Duan"s Syndrome.

I don't know that I am a candidate for surgery, and even if I was I would probably be too scared anyway....my eyes are ultra sensitive.

I am just so relieved to know that this is a recognised sydrome, I always thought that I just had a squint that was caused by a previous injury.


Taylor 6 years ago

I'm 13 and from the UK. I was diagnosed with DS (left) when I was around 10 months. Everyone thought that I had a squint. I can't remember ever being bullied about DS but I have been about my glasses which i need for my long sightedness. I have to sit on a specific side of the class so I don't need to turn my eye. I haven't had double vision since I was around 7. Im glad I found this hub because I haven't met anyone with DS so its good to hear all your experiences. Im a bit scared about driving cause I think it will be really hard.


Liz 6 years ago

Thank you so much for this piece, and to all those who commented.

My 8month old son has just been diagnosed with Duane's Syndrome - it's his right eye and he can't move it to the right.

I had, of course, never heard of it, and was very upset for my son - so I was glad to find this post and all the comments - it has helped me enormously.


Shelly 6 years ago

I am 40 years old with DS in my left eye. My son has it in the same eye. I wish I had thought of learning to bat lefthanded when I was little, I probably would have been a better hitter. Weve never met anyone else with it. My son and I think we are special and make jokes about it. I never have felt out of place. I have always compensated for the little annoyances.I had a big family pic.done with some extended family I rarely see.A cousin was critiquing them and kept saying,"not that one, she is looking away. " I happen to be "looking away" in all of them. That is the biggest annoyance. They way I look in pics. Now if that is the biggest problem I have, Ill take DS over anything else! I would like laser surgery to correct my nearsightedness. My specialist told me years ago I am not a candidate because of the DS. Can someone shed some light on why that is?


SG 5 years ago

My 10 year old daughter was born with this syndrome in her right eye. Her eye doctor actually did the special alignment operation when she was 4. It really helped and has stayed centered. Since we had a very early diagnosis (around 1 year) we got her to the specialist and therapy right away. We did the dreaded eye patch on her left eye for the first 5 years and have done the daily left eye pupil dialation treatment for the last five. By age 11, her eye doctor said that the dilation will no longer be needed and that she will be just fine. She has done really well with it and most of the time, no one ever notices or even knows about it. For a joke, she will occasionally turn her left eye sharply inward to expose her condition to family and close friends. No one has an issue with it and she has never been teased. We have always worked with her teachers to make sure that she is positioned correctly in the classroom. She also uses special magnified devices to help her with seeing small print. There are so many more worse things that someone can be afflicted with so we are very grateful that this is something that is easily managed and we don't even think about it most days! For those parents of young children who are just finding out about it, please take comfort in knowing that in most cases, this condition can be managed with eye therapy, patches, eye drops, and glasses. Your child can truly lead a "normal" life.


Shannon 5 years ago

I am almost 30 and I just heard my eye doctor say that I have Duane's Syndrome for the first time! I always thought I had a Lazy Eye. I cannot believe my former eye doctors never used the proper term with me. Thank yo so much for sharing your story.


johnnyarmusuk 5 years ago

I am 26 years old. I am a male, living with what MIGHT be Duane's Syndrome in my left eye. No doctor has really decided on classifying it, but I too have a problem moving my left eye out. I have a question for you though. If you close your right eye, can you move your left eye over further than in that photo?


MC 5 years ago

I have exactly the same condition. The duane syndrom in in my left eye and I have had many of the same problems through school and with driving. I am 20 years old and am about to graduate college. I wish their was some completely effective treatment for this. I do wear contacts and glasses but I ofen go with out because the prescription always seems off because of the duane syndrom. Has anyone else had this problem?


MC 5 years ago

Also, I don't think anyone has mentioned this but from what I have heard from my family Duane syndrome is a genetic trait that skips a generation.


Harriet Kutzman 5 years ago

This is a great article and describes it so perfectly, exactly how i feel and manage. The one thing that is so frustrating though, is when someone says oh look at something that is behind me on my left and I have to turn to my FAR left and then look to the right to sdee it and they see my head and say you are not looking at the right thing WHEN in fact I am but they think I am looking at something else!! When I was young (73 now) people would think I was stupid because I did not look where they thought I should be looking!! Oh well tht should be my worst problem in life eh!!


Anonymous patient 5 years ago

I also have this shit (left eye can´t move fully to the left). Don´t know exactly when I was diagnosed, probably when I was around 1-3 years old. Today I am 18 years old and I hate it.

When I was younger (up to the age of 16) I had no major problems with it in school, sports and so on. But in retrospect I think I can see some negative psychosocial developments derive from duanes. However in that time of life I myself did not perceive any problems and no one dared to mock me in school (most people wouldn't notice, and the ones who did dared not to comment anything other than "cool").

As I have grown older both my understanding and awareness of the condition has increased. I also think the condition itself has worsened (I have more "double vision" and my back/neck/spine is hurting/being twisted more and more due to the "head turn"-thing). My dream since I was a child has always been to join my proud nation´s military - because of this shit I'm not allowed to do that. This is making my life not worth living for me and I'm struggling - and more and more losing "the inner battle" - through every day I have to live with this. My last and only hope is the slight possibility of a cure in the future (surgery today is risky and cant really help that much, therefore it is not a real solution, and I'm anyhow not allowed to have surgery after consulting the greatest experts in my country on this).

I cant say it was nice reading this and all peoples experiences (nothing about duanes is nice or pleasant for me), but it might have had some positive therapeutic effect and I'm genuinely glad for all persons who manage to get along well with their disease.


Gaby 5 years ago

I wanted to know if anyone who posted about having the surgery would be willing to share what Doctor they used. I live in Seattle and would love to hear about any suggestions.


Bre 5 years ago

I can't express enough how grateful I am to have stumbled onto this article and all your comments! My 5 year old was diagnosed with Duane's Syndrome Type II when she was 2 years old. Today (literally) our Pediatric Eye Professional got the ball rolling to schedule the Surgery. My first reaction to this news was to inwardly 'spaz out.' I have spent the remainder of today searching the Web and this article (and all your comments)definitely made me lighten up and feel better about our decision to agree to the Surgery. Thank you to all--marking this as a Favorite so I can review the comments more thoroughly.


Ty's Mom  5 years ago

I am 35 years, and have had DS since I was born, I have lived a happy life and I have never let DS affect me negatively. My nephew from time to time will say to me "Auntie why are you making your eye look funny" He is really the only one that notices, and I giggle and usually make it worse for him, and then he gets discouraged because he is unable to do the same with his eyes. QUESTION I am considering Laser Eye Surgery, will this affect my DS, I have yet to go for the consultation in fear that DS will be an issue.


Bre 5 years ago

Ty's Mom---I posed the question regarding my 5 year old to her Pediatric Ophthalmologist in regard to if this will affect her down the road if she wishes to have Laser Eye Surgery--he stated that it will not affect her ability to chose this option--she will be able to do so is she wants/needs. He is affiliated with Cleveland Clinic Cole Eye Center which is highly regarded in Northern Ohio. It is my understanding that DS really does not affect our Vision Prescription (unless you opt for the eye glasses with prisms which is strictly to correct the head posture--focus) and there are many instances where people with DS have great vision---it is more of a "Mis-wiring" between the eye muscle(s) and the brain. I'm more relaxed about the whole thing since I've spent much time reading and listening on the subject of DS (and continuing to do so). However, as always, confirming with a Professional you feel comfortable with and trust is the the best. Cute story about your nephew:)


Glenn 5 years ago

I also have this condition. I have been called stoned before. I have even been refused entry to a nightclub as the bouncer thoguht I looked drunk (I was completely sober). Mine might not be as severe as I don't have the head turn issue, but that must be really annoying.


Echerry 5 years ago

Thank you for sharing! My son is two and has DS, his first surgery was when he was 1, now he is 2 1/2 and the doctor has recomnended 2nd surgery. We are going to do it and pray

Is the last one but i know how DS surgery can only be temp :/ thank you for sharing how it feels sice my son can express yet and i want to be ready to undetstand him when we have that conversation.


Catherz profile image

Catherz 5 years ago from Maryland

I too suffer from DS.

I'm 18 and i have an even rarer form of DS call Duanes Retraction syndrom. My condition is not able to be treated through surgery.

Im very happy for you and for everyone who has been able to has surgery.

I struggle everyday with basic activies from driving, seeing the board in class, and even studying. Sometimes i double type words in my essays.

anyway. I am happy for you and glad you were able to conquor your DS.


Matt 5 years ago

Hi, I have DRS, diagnosed at 2 because of a bad squint. My parents relocated to Perth, Australia to be near a specialist to see what could be done. Nothing.

I'm now 33 and have come to terms with it just.

It doesn't affect my vision, I have a 15-20degree head turn and have had major major problems since 11years old with back pain. sometimes crippling.

Socially no one has ever called me cross eyed or made fun of me but I am extremely self conscious and upon initial meetings people take a defensive stance as they think I am 'looking at them sideways'. However once people get to know me it doesn't even cross their minds and people comment they don't even notice.

Recently I have got upset as my new partner, who had no idea about the symptoms, makes cross eyes when she feels stumped or unsure about something. I've called her out on it and she was very apologetic about my own insecurites.

I used to see a specialist at massive costs every year to check on a cure or surgery, but since with the head turn my eyes are straight, there is no way to rewire a missing nerve.

Anyway, just another foible of the human condition, good on people for seeking surgery and staying informed.

Also really good to see blogs like this and know you are not alone. kia kaha - stay strong


ketki 5 years ago

like u all , i too have the same problem since birth. since childhood i have been facing people who used to make fun fun of me and till now m facing the same. now my age is 24. i wonder y people make fun of others wen no one is perfect.although till now i have enjoyed my life to the fullest, i still feel that i should also live a life with right vision. if not right then atleast with the eyes whose condition cant be noticed by anyone. but unfortunately this is not the case. people do easily notice my DS and make fun of me. although it might surprise u all that i was into relationship and that guy loved me a lot despite of my problem. this shows that there still exist people who crave for heart which is full of love rather than looks. but i moved on with this relationship because my in laws hated me for my eyes. i again fell in love with another guy. he too knew my problem but still loved for my heart. but again this time too, his parents hated me for my eye problem.by now i have lost my self confidence and feel like not to marry anyone and not to ruin anyone's life.another reason is i feel that i should preserve my self respect by not marrying to my love because i wont be able to hear my in- laws saying me everytime about my problem and making me realize it everytime that they have done favour to me.

i feel like there is no meaning to my life. is there really no solution to this problem? science is advanced now and even there has been treatment for aids recently discovered. then y not DS?


Madison 5 years ago

I'm 16 and have had DS since birth. Throughout elementary and middle school I would forget to compensate, but all my friends thought it was the coolest thing, so I was quick to accept it myself. Driving can be a hassle as I have to turn my body in order to "glance" over my shoulder.(L eye can't turn L) I still don't have a problem telling my friends about it, and they usually don't even notice because I am better at hiding it now. One hassle though is taking pictures and having to explain it to the photographer. (In my yearbook I am the only one facing a different direction than everyone else haha) My advice is to just tell people (friends not strangers obviously) because they only stare out of curiosity.


Scott 5 years ago

I I'm sure their is something out there to fix the problem but it will take a while to improv it. We are in the begging year of 2011 and anything is possible now. Some told me about some glasses they will make you look better with the head turn.


TRACEY 5 years ago

My son has just been diagnosed with this at 2 years of age and we are debating about the surgery....thanks this page was very helpful!


Polli 5 years ago

Hi there, I am 55 and have been living with Duane's all my life, although I didn't know what it was until I was in my 30s. I was treated for a lazy eye whilst I was a child, but as we now know, that was ineffective.

The problem with the squint did get a bit worse as I got older, and I have now had three lots of surgery, the latest being just over a week ago.

Duane's has not stopped me doing anything, I drive, swim, walk and have a very active social life. I also had laser surgery 10 years ago as my short-sightedness was a problem - that was truly life changing and I would definitely recommend it.

Please watch out for hearing loss later in life too - that is another symptom of Duane's apparently, and has affected me too.

There are times when it definitely affects one's confidence, especially when young, but don't let it get you down, we are all special in some ways, and I think dealing with this and with adverse comments from some shallow and unintelligent people has made me stronger and a better person.

Good luck everyone.


Amy 5 years ago

Wow I can't believe how many other people have duanes syndrome!! I am 14 and I have duanes syndrome and can't move my left eye to the left side. It has never really bothered me before, it is a bit difficult looking to the left side and I have been teased about it in the past but I never thought much of it when I was younger. But recently being in high school now I have become really concious of my eye. I feel different when I'm at school and when ever I turn to talk to people I always make sure I turn to to the right so I don't feel arkward about my eye. I don't know why I am so concious of my eye when really there is so many people out there with duanes.. This arcticle was really inspiring and reasurring :)


Tom 5 years ago

I have DS in my rigt eye and I have had 2 surgery so far. The first surgery didn't do anything, but the second was better. Before my secOnd surgery I couldn't move my right eye inward or outward. After the second surgery I can now move my right eye to the left "inward" but when I do look to the left my my right eye goes in and It doesn't feel normal at all. I still till my head to the left. Hate it. I I'm looking forward to my next surgery to fix the head turn. Good luck to all!


Kathryn 5 years ago

I have DS as well. I can't believe how many people out there have it too! I was teased a lot in middle school (I remember one substitute teacher even referring to me as "the cross-eyed girl") so that part of my life was pretty painful. Now that I'm out of school (I'm 25) and have gotten pretty good at concealing it, people rarely notice it. Most people I meet, unless they're doctors or someone trained to notice those types of things, don't even realize that there's something going on there. My boyfriend didn't notice anything after a year of dating. People can be so mean, though. Why make fun of something that you can't change? I hate that. I guess the whole thing has made us all stronger people ... right?


Annie 5 years ago

I have duane syndrome also. how ever from what i have read i am very lucky because the only impairment i have is that my left eye does not move left, straight on i can see fine and to the right i can see fine also. Although like you when I was little i didnt know how to compensate for it and was called "crazy eyes" now I call it my crazy eye as a joke to lighten the mood when people want to take my picture from the left or something. I actually have had great eye sight my entire life with 20/10 vision. however I have been noticing my left eye getting weaker and while i can still see fine out of it, it is getting a little blury and it making me nervous that the sight in it it will continue to deteriorate. which is how i found this website because I was googling the condition.

Also any one who has duane syndrome and had children, have they been effected by it i read somewhere that if you have it and your children get it they are more likely to have both eyes effected. wondering if any one had any information about that?


Sarah  5 years ago

Unbelievable. I


Sarah 5 years ago

Woops... nothing to do with my condition, just late at night and pressed enter by mistake! I too have lived with this condition all my life ( I am 36) but only discovered today that it was Duane Syndrome, at my 3 year old daughter's routine pre school eye test! I have particularly been suffering with neck / upper back strain recently but have never associated the two. Like many others, it is just good to hear other people's experiences; my life is too full and busy to worry about it too much with my two toddlers to look after, but I would be lying if I said it never bothered me. The head turn to the left I feel is the big give away as it can look so strange to an onlooker, but it is preferable to the 'in turn' of the eye if I did not physically compensate for it. As with any condition, particularly one that does not overly affect your quality of life, I think it is best not to dwell overly...I was thrilled to discover my daughter has perfect vision and eye control and keep my fingers crossed for my two year old daughter. These things are sent to try us, but I managed to achieve an honours degree in Modern Languages and hold down a great teaching career prior to becomng a Mum. It certainly hasn't held be back and don't plan on letting it!!


Faye 5 years ago

Hi. Im 13 and have DS. I have never been teased or bullied about my eye, instead people think it's cool! However, it is annoying trying to talk to someone on my left as I have it in my left eye. It doesn't affect me that much as I easily deal with it. I have also noticed that my left eye is smaller than my right.

I didn't know so many people have it or have had surgery to correct it. I don't want surgery as i am happy with the way I am. Thanks for the post. :)


John uk 5 years ago

Just found out our 18 month old as duanes a little scared at first but a little more relaxed since reading all of the above comments any advice greatfully recieved


Cassie22 5 years ago

Its nice to hear stories about other people that have the same problem that I do. I only personally know one other person besides myself that has dunes syndrome. I've had mine since I was two weeks old.


Cassie22 5 years ago

duane*


rbanditt 5 years ago

Thanks so much for this! I have it in my right eye and didn't realize how rare it is. I was diagnosed and treated throughout my childhood. I am in my mid-30s and have always compensated. I have also had perfect and now near-perfect vision. I do not have double-vision.

I was told that surgery was not an option by my childhood specialist. Now, I am intrigued.

My two babies do NOT have DS.

For parents, your little ones will be fine. I was picked on occassionally but I was mostly harder on myself! Vanity is a cruel thing.

I am a former beauty queen by the way. My husband says my eye is God's way of keeping me honest. :)


Marci 5 years ago

I just took my 19month old daughter into the eye dr this afternoon... when she was born, I noticed right away that her left eye didn't "LOOK RIGHT" - the dr's kept telling me that it should correct itself. Well at 18months I said it still hadn't corrected itself, so they sent me to a specialist... needless to say the dr today told me it was Duane Syndrome, which of course I have never heard of before. He said it seemed pretty mild, but as young as she is he could not run all the tests that would confirm everything, so we are to go back in 6 months.

So, of course I came home and have been doing research on this to find out more about it... I thank you so much for posting this, this is the only thing that was easy to read. And I want to thank everyone for sharing their stories.

I am also affraid of the teasing my little girl is going to get growing up, children can be just down right mean. But I know this is also a way to make her a very strong individual, and God would not have done this if we couldn't handle it.


5 years ago

I've had this condition all my life too. I can't say I've made the best of it, to me it's awful. I've been told that I have the weirdest eyes in the world. People can be so mean. Even my best friend growing up used to ask me why my eyes were so odd. Broke my heart. Surgery and prism glasses were never an option.

I really hate it as I'm told how pretty I am but will never feel pretty with this condition. I will always think of myself as cross-eyed and I hate that. I was picked on at school but luckily my older brother put an end to that pretty quickly.

I don't think I've ever had a problem with the opposite sex but I've always been SUPER self-concious about this. If I could wear sunglasses 24-7 I would!!!

I am just hoping my 14 month old daughter doesn't inherit this disorder. Does anyone know what age it shows up?

- 34 yr old female


Deb123 5 years ago

hi my name is Debbie my daughter has this condition and suffers quite badly due to double vision limited vision and glare she recently went up to senior school 11 to 18 year olds they have lots of slopes and stepsat this school she has lots of difficulty with this as her balance is impaired due to hearing impairment also she has left sided duane's syndrome type possibly 3 but still unclear at the moment she says she hates school as she gets picked on all the time and boys push into her and call her names spoke to her school but little is done about it hope she gets stronger soon so she can deal with them her written work is unreaderble and iwas thinking of getting her to work on computer for all her written work what helped other ds sufferers


Zoe 5 years ago

Hey to all,i need some guidance, i have duane syndrome but am scard to get surgery. plz guide me what should i do, i am 26 years old and soon going to marry, before that i want to get operated, or resovle this problem. hope someone will guide me through it, also plz let me know will sugrey leave marks on face? because i have beautiful eyes and dont want to ruin them.

thanks,


Sloan 5 years ago

Just found this site and am so excited to find so many people with Duane's like me. I can relate to eveyone's comments about teasing, insecurities, and ultimately becoming stronger. Duane's has made me very sensitive to other people's feelings and their own insecurities; it has made me very empathetic.

Zoe--I have had 2 surgeries. They both had short term amazing results. I thought I was "fixed," but after each one my eye has slowly returned closer to it's original position. My last surgery was about 3 years ago, and still I would say my eyes look better than they did, and that the surgery was worth it, but it seems like eventually I will be right back where I started from. It's a tough call. I do not regret the surgeries, but I'm not sure I'll have another one.

One thing to consider--after each surgery, the white of my eye was bruised for almost 2 months. Initially it was dark red, almost black, on the outter half. This slowly shrank, but like I said, it was about 2 months before it was all white again. I'm not sure if this is typical, but you could ask your doctor. Might be something to think about regarding the timing of your wedding and wedding pictures. There were no other marks and no scars. The surgeon goes in right behind the eye and does not cut the actual skin around the eye.


Rebecca 5 years ago

I was diagnosed with Duane's as an infant. My baby pictures show that my head turn was immediate (it is about 30 degrees to the left with a tilt of about 22 degrees). I started wearing glasses at the age of 2 because I also have severe astigmatism and near-sightedness.

I, too, was teased relentlessly as a kid which took me years to overcome. My childhood experience has helped me teach my own children (neither of which "inherited" Duan'es) about being kind to people who are perceived as different. My family and real friends have always been very supportive. By the time I was in my late teens I'd become very good at keeping people on my right side so that I could see them and disguise my condition.

Duane's didn't affect my ability to play sports at all - I played soccer, basketball and softball throughout high school. The biggest problem was softball. I never thought to bat left handed (!) and team mates hesitated throwing the ball to me because they saw where my head was pointed, not my eyes.

I am still self-conscious, especially when meeting new people or when having my picture taken. I am 44 and have started developing arthritis and disc swelling in my neck because of my head turn/tilt. I'm not a candidate for lasik for my astigmatism and myopia because of my Duane's. I've never needed prismatic lenses, but the chances are 50-50 if I have lasik. My understanding has always been that any surgery for Duane's would essentially be cosmetic, and since my eye is nearly centered I decided long ago not to have the procedure (though they started offering it to me when I was 7 years old).

I never met another person with Duane's until I was in my early 30s and have only started finding more medical information in the last few years. This was a great article and follow-up conversation! Thank you EVERYONE!


TK Alberta 5 years ago

My son is 12 years old, and has DS. I am so happy to have found this sight! I am very concerned, because I took him to his last appointment, and was made to sign a legal document stating that my son may not be able to ever drive with this condition. Is this a new thing? I have read about many people who do drive, but is it safe? Should I get a second opinion? My son not being able to ever drive is a huge deal for me and is very scary to think this may be true! Please send me your ideas or thoughts. We have also signed him up for minor ball this year and hope that he is able to play. Any advice for this? mtmk3@hotmail.com Love this site!


kat 5 years ago

Hi,

Im not too sure if I'm in the right place. My boyfriend (aged 23) has been diagnosed with DS after having scans to rule out MS. I have been trying to get info on why it would have come on now, rather than childhood? His younger brother was diagnosed with DS at aged 4 but my boyfriend showed no signs of it till about a week ago.

Any help would really be appreciated, he is feeling pretty low about not being able to see properly.

Thank you

Kat


Ashley kj 5 years ago

This was sooo refreshing to read! I have DS and I never knew how many people had it! I have felt so alone with it. When I was a lot younger I used to get teased all the time... Getting called "lazy eyed" or a "cross-eyed freak" and since my left eye, the one with DS is smaller than my other eye, I uses to hear "cyclops" too. I have learned how to move my head better, I'm 20, and people don't usually notice, or if they do they don't say anything anymore. I've never met anyone with DS but I'd like to... Just to share stories.


April 5 years ago

I have DS. I used to be bullied at school and called cross-eyed. I am 64 years old and was only diagnosed about 10 years ago. I don't take any notice now but am wondering if the pain and discomfort I get in my neck and shoulder is caused by the constant turning of the head to compensate for not being able to turn my left eye to the left. My optician tells me that I am his only patient with this condition. He has been practicing for 30 years and has never come across it before. It's good to know that I am not the only sufferer.


carla 5 years ago

Thank you all for sharing your stories - my son has duanes syndrome and I have been worrying about how it will affect him in the years to come. To hear that you are driving, playing sport etc has really helped me see that it wil not hold him back x


Natalie 5 years ago

I just found out my daughter has it. She is only 11 1/2 months old. It was kind of scary at first, because I have never heard of it, and nobody I know in me or her Dad's family have it, but the Doctor assured me that she will cope just fine, she just needs to compensate by turning her head instead of her eyes. She is a beautiful little girl, and I know she will be just fine. I am just praying that kids don't tease her too much in her adolescent years, because I know how hard that can be. I am trying to do more research on Duane Syndrome so I can fully understand what we have ahead of us. This is very helpfull.


stan 5 years ago

Im a 19 year old in college and I have mild duane syndrome in my right eye. Reading these stories, I can see that a lot of younger people dealing with social issues. Just having finished high school, I can relate to these problems and have some advice that I wish I was given at a younger age.

This is only as much of a problem as you make it. The key to overcoming DS is to come to terms with it. Realize that it will always be a part of your life and then move on. I know its hard, being afraid to look people in the eye, keeping your head nodded, the constant fear of people noticing, overcompensating and coming off as a dick, etc. I've been there and I know it comes down hard on your self-confidence. You can't let it consume you. I had a few months during junior year that were some of the darkest in my life so I know how bad it can get. Just stick with it and don't let it bring you down.


duaned 5 years ago

Hello,

I have this problem at my right eye. Right eye doesn't move to the right when I look to the right.

When I look straight it is ok and I don't have any diplopia problem(but of course vision angle of the right side is limited). Moving up and down is symmetrical and without problem.

For compensation I turn my head to the right which creates extra tension on my neck and shoulder as yours.

I had similar childhood story, and turning people around me, and some doctor didn't notice as well :)

Thanks for sharing and opening this hub.


Allison 5 years ago

I am 46 years old, and was born with DS in my right eye. I have never met anyone else with DS and it has been a big comfort to read I am not alone (Always thought I was the only person with this eye defect). Like everyone else I compensate by turning my head, trying to find the right seat etc and have struggled with eye/hand coordination, something I have found hard to accept and have exhausted myself trying to accomplish. I am now suffering from back, neck and shoulder pains and only this morning it has dawned on me that this is probably due to compensating and therefore googled to see if there was a link. I think from reading some of the posts from those over 40 years old that the pains are due to compensating, and would love to hear from anyone who suffers and if there is something that can be done to relieve the pain. Thank you....


duaned 5 years ago

I ve forgotten to write my age, I m 38.

It is not editable so I m sending another post.

I haven't met anybody in my life wits DS except my father, it really seems extreme rare condition.


ClaireM 5 years ago

It was SO good to read others xperience which in many ways mirrored my experience. Love the note about 3D, Ive been joking that my wring doesnt allow me to see in 3D. haha! As a toddler my parents noticed my eyes were 'out of synch' before doctors did, and once identified, went to specialists who were really straight forward about the options available and gave my parents practical solutions.

I am fortunate that my eyes look straight ahead and only my right eye cannot turn to the right, although as a child was slightly turned to the nose. My parents had me doing the eye exercises every day and I wore a patch at times to strengthen the muscles in the eye. I believe this must have helped and encourage parents to put the time in to do this, even though it is hard at times to accept your little one is not perfect and may not like it. Im now 36 and I have good vision and my eyes are 'strong'. Learning to compensate for the bad eye took me until my teens, where I naturally turned my head, Growing up with DS hadits challenges, I was painfully shy because kids are kids and not always kind,, in no way should this stop anyone from achieving a goal. For parents with kids with DS, support them and let them realise they are unique but not broken. I have little or no time for adults who adopt a juveile approach if they have noticed and commented. Reeks of insecurity.

I have never felt this has held me back. I am a successful career women,who does regular public speaking.I think my eyes are my most attractive feature! I've even done some acting and character modelling for fun when I was in my twenties, I just learned to really work my goodside! Remember, those who love and care for you see only your heart, not an afflction.


Ivan 5 years ago

Thank's all for sharing your experiences with all of us. My son is 5 and has DS. He compensates by turning his head to the right and his left eye is "smaller" as he likes to say. No teasing at school (not yet, GAD), his friends are telling him that his left eye is smaller than the right eye.

I take it from the writings that most people learn to compensate and they are able to do it later in life. For us this is completely normal and we don't notice most of the time, he is a loving, awesome kid. But the fact that he will be teased in elementary, is killing me.

How do I teach him to compensate (he does it sometimes)? Can he practice to do so?

Is there anything that your parents did or didn't do when you were growing up that you liked or disliked about how they handled DS?

Thxs in advance for your responses.


Mary 5 years ago

My twin sister and I have exactly the same Duane's as you describe; the same troubles, ie. head turn causing neck strain etc, not being able to rely on mirrors whilst driving etc etc. I have to say, reading comments below the story I am surprised by the reaction, particularly asking whether it is legal to drive! I do not find it any big deal and neither does anyone around me. The only time it was ever a problem was at school being called the boss-eyed twins - kids in playgrounds.

Great to read your story however as it was like I was reading about myself - other than I have not had nor will have surgery to correct it.


Nicole-Taylour Louise  5 years ago

hi , umm my names Nicole and ive got dwains eye too , im 14 and ive been getting bullied by it all my life , i absoultly hate it !!!! i cant deal with it anymore , so i just wanted to ask a question .) is there a cure at all. ?

.) why do the kids at school bully me ?

so , if some one could answer it would mean a lot !!

i get called Wonkey Donkey ,& (everything people can think of i get caled really ) Freak show , unhuman , i even get beaten up sometimes because im " different " i would never tell my mum tho , i just dont know who to talk to , any help/advise would mean a LOT ! thanks xxxx


Courtney 5 years ago

I'm 13 and I've had it since I was born. I've been teased and made fun of my whole life and I hve very low self esteem. It makes me feel a lot better to know I'm not the only one going though this! I have been to the childrens hospital recently and have been put on the waiting list for the surgery. I'm so nervous but so tired of having this I just want to get it over with. The doctors said since my eyes have een working so hard that I have 20/20 vision and after the surgery I will have to o to physio therapy for turning my kneck so much. After researching duanes syndrome I found out that 70% of people that hve it hve another problem, I do. Thnk you so muh for posting this it make me feel not alone anymore (:


Jeff 5 years ago

I also have DS. I have never been teased about it, but I've always hid it well. My left eye cannot look right. Whenever looking towards the right I close my left eyelid so it looks like I'm winking. Ninety-five percent of people don't notice.

I do have problems with reading though. I usually get double vision and headaches after reading for more than 5 minutes.

Driving is kind of a pain in the ass as well. I just hope I can twist to see what's around me when I'm an old man.

So, if you want to hide it. Just close your eye if you can. It works. Take care


Cindy 5 years ago

My 14 y/o son has DS and has compensated by doing tricks with his eyes and being the class clown. It's gotten him into trouble and now he realizes that he just didn't want to be teased so he tried to make people laugh. He's very self conscious and wears his hair over his affected eye. He also has terrible eye contact with people. I recall when he was younger, adults would yell at him to "look at me when I speak to you". He would be looking at them but with a significant head turn. It used to make me so mad when people would get angry at him for that.

We live near Boston and he's had one surgery at 3 y/o but he's asking about anything that could reduce the narrowing of the affected eye. His Dr. said that he is unaware of any surgery but would ask his colleagues.

If anyone know's of anything please let me know.

Thanks


Faz 5 years ago

I am 14 and have DS. It makes me sad how people are bullied because of it as i never have. I have learnt to hide it quite well and I am confident with it as I amaze people when I do it! But if people say something, I don't take it to heart and I get on with my life as I have friends and family who are very understanding. I hope the people who get bullied have a better future. It also annoys me how I can do nothing to help!

Thats all! :)


Craig Byers 5 years ago

I'm a 25 year old guy who's had Duanes from birth. Yeah, it was hard in primary school especially, what with kids teasing etc, but you soon realise that it's almost always just a cosmetic problem, as I never suffered from double vsion, and | also chose not to have surgery. It helps make you a stronnger person in the long run! Now? I'm a teacher of Physics and a part-time pro-wrestler! Don't sweat Duanes- the teasing hurts but forget it- foklks like that aren't worth a jot! :)


Sue Ludwig 5 years ago

I am 48 years old and finally have a diagnosis. After 10 years of seeing the surgeon he is confident I have DS. Mine does not present itself in the normal way apparently. Did not even have problems til I was an adult. My eye is pulled all the way in and I am having surgery to correct it on 8/22. Hoping it takes!


Sara 5 years ago

I have Duane's Syndrome in my left eye. I was diagnosed at 1 week old and had the surgery immediately so I don't remember a thing. Like many of the other posters, I had confidence/eye contact issue for a very long time until a great doctor taught me a trick: look at the bridge of the nose of the person you're talking to. It keeps your eyes focused on one thing so you don't feel like your eye is pointing travelers to the interstate and it looks like you're looking right into the person's eyes! Anyway in junior high I was picked on really badly for it but in high school I had side bangs cut in my hair and they hide any "mishaps." As for looking up I tilt my head slightly to the right and it looks fine. Many doctors do perform the extra tests because they are fascinated. Lol and as for 3D it makes me wayyyyy dizzy but I do not have double vision. It's not the worst disease out there and it will not hinder your dreams and activities. I was on the varsity girls golf team for a 6A school so the sport thing isn't a problem. As for driving, I have fisheyes on my truck that help so much and do a double head turn before crossing lanes in my car. I'm so glad there's a site for us fellow Duane-ers to discuss our trials and tribulations (and coping ideas). :)


Vanessa 5 years ago

hey,

I'm 18 years old and have been diagnosed with DS since i was a little younger then a year. Though untill about a year and a half ago my parents chose not to tell me. going through middle and elementry years having the other kids saying "lazy eye" comments and that coupled with my speach inpairment caused me to only talk to a few people.

DS now that i've read some about it explains why i get this pain in the cornor of my eye when i was looking at the bord or at my papers, which often caused me to close my eyes and rub the corner of it. which made playing softball and basketball a bit more difficult for me then my freinds. and if i had known that was what caused my limited side vision i would have learnt to bat the other way, i probably wouldn't have broken my thumb in practice then(LOL).

When my parents first told me about it i asked if there was anyway to fix it and they told me that the doctor at the time had said for me there would be at least a 50% chance i would go blind, they elected for me not to have it. though from reading this it seems like the chance for that has gone down.

And while i try not to let it effect my life much my neck does get sore from tilting my head so that i have better periphial vision(sorry about my spelling not my best subject, you tend to have to look at your spelling words and books to study and it tends to give me a eyeache). any one have any study ideas??? because taking lots of breaks tends to work but is not great for my concentation.


welshie 5 years ago

Nicole-Taylour Louise -

Hi, you sound really down!! I dont have a cure for DS, I can only share with you my own experiences.

I'm 27 and I have had DS all of my life. My DS is in my left eye, I cant look left and my eye turns upwards when I look right. Also my left eye is much smaller than the right - it is very noticable!

When I was in school I was bullied for it, I even got beaten with a cricket bat!! I have no answer to why people feel the need to do these things, but can I ask, do you have a bestfriend??

It was my friends who would get me through it, just because when they looked at me they didnt see DS, They just saw me!

People tend to notice my eye as soon as they meet me, but after getting to know me ppl say they dont even notice it anymore.

Also I work with 16, 17 and 18 year olds now (I'm a teacher) and where as they notice my eye, not once have they said anything to me about it - though I bring it up myself!

I know things are tough now, but I promise that they do get better. One thing I would recommend is telling your mother. I know that you do not want to worry her, but talking to her will make you feel less 'alone'-because I bet you feel like no one around you understands how it feels to have DS or to be bullied for it! But that is what your mother is for - someone to talk to, and understand how you feel!

Finally - I can also promise that it will not stop you from living your life! I have a successful career, done some travelling, have amazing friends, a great social life and an unbelieveably gorgeous and amazing boyfriend! I hope that I have helped a little bit! x x x


hannah  5 years ago

After reading the amazing article and most of the comments, I have realised that I am not the only person who have the disease! I grew up in Somalia were only the blind people have the priority for surgery. I also have the Duane syndrome in my left eye and can’t look the left side and I had a surgery to move it to the centre which didn’t work for me at all. But the worst problem that I have is that my left eye is smaller, sometimes I have uncontrollable tears coming from my left eye and I cannot see clearly if I cover my right eye. I have been called “cross eye” when I was young and I hated it so much but now I can control my movements of my head and people don’t notice it easily but they can see that my left eye is smaller. Doctors told me that they can make my left eye bigger and same size as my right eye I am scared of having another surgery


meg 5 years ago

It's so nice to read about others with this condition as well. I'm 18 and have DS in my right eye. I can more then relate to those of you who struggle with the "head turning" issue. I've learned to sit to the left of people, but there are definitely times when I have no choice, and am forced to turn my entire body to the right in order to not look at someone cross eyed... that is always incredibly uncomfortable.

I was just today asked if "I could feel my eyes crossing" and I must admit (even being 18 years old), it forced me to tears. For those of you struggling with this condition... there will always be ignorant and rude people out there. Some people are just blunt and don't even realize how hurtful their words are. Embrace who you are, and don't let these comments bring you down!


Stacy 5 years ago

I'm 64 and was born with Duane's Syndrome but never knew the diagnosis until a few years ago. When I was under 5 yrs old the Doctor transplanted part of my right eye muscle into my left eye. It's only when I look to the left that the eye doesn't want to turn all the way but I've learned to live with it because it doesn't affect my health. My friends have always been kind and never hurt my feelings. These comments really help knowing you're not alone. I'm considering Lasik surgery and wonder if anyone with "DS" has ever had Lasik surgery and if you've had any problems after surgery. I'd appreciate your comments.


angie 5 years ago

i found out last year tht my daughter has duanes syndrone and she is only 16 onths old now iam scard tht she wont cope with as she gets older and wont move her head or anything like tht do you know if poeple can get dla for this sort of thing xx


claire 5 years ago

hi im 27 and 2months ago i found out i had duanes syndrmoe type 3 the very rare one,i was all ways told it was a lazy eye but my neck and shoulders started to hurt me with always turning my head. im worryed because no one has got my type the doctor told me i was the only one who has got all 3 types in one and he has never op on anyone with my condition but i have had an op last month and now have 23% in my left eye i could see through it tho i just have 2 type of seeing with my eyes i know it sound crazy but i do. i would like to know does this condition course and other problems thanks xxxx


gracie 5 years ago

ive got ds an im only 12 i hate it cause people always say whats wrong with your eyes at skool an i always say lazy eye cause i dont wanna tell them ive had the operation when i was like 8 it hasnt helped much i dont care about the vision i just hate what people say.


Alex 5 years ago

It's very hard to deal with sometimes with people saying u have a lazy eye or your cross eyed by kids in school..But it has got better though out the years not being picked on as much. But you know your eyes are still not as normal as others..And the thing I hate is taking pictures because I don't know if my Head is straight or if my eyes are crossed in them...Im 18 years old now it's a problem that I have learned to live with...


Alex 5 years ago

It's very hard to deal with sometimes with people saying u have a lazy eye or your cross eyed by kids in school..But it has got better though out the years not being picked on as much. But you know your eyes are still not as normal as others..And the thing I hate is taking pictures because I don't know if my Head is straight or if my eyes are crossed in them...Im 18 years old now it's a problem that I have learned to live with...


Shelby Celeste 5 years ago

hey! im 15 and have duane syndrome and your right people do mistake it with lazy eye i cry every night because people always make fun of me and like other ppl i hate taking pictures cuz its so bad when we have to retake because of my eye it really sucks when i was two i had surgery and it didnt help much its just scary every day to wakeup and be like is someone going to notice and everytime there is a cute boy hes like do you have a lazy eye and i have to explain to him what duane syndrome is and it sucks cuz them ppl say i draw attention when im informing them about it i hate it i havdr brown eyes and plus i have the thing its horrible. thats why i normally have my bangs covering my right eye (where i have it) so no one will notice.


Carrie 5 years ago

Bless your heart!! THANK YOU SO MUCH for sharing!!! Our 11 yr. old has Duane Syndrome & has had several surgries as well many pairs of glasses since he was 11 months old. He also has mild Cerebral Palsy which is making some things a bit hard to determine. If you don't mind me asking, please, did you have a hard time w/reading in school??

Thank you again for sharing! Stay strong & please continue to be an insperation to others!!

Carrie


Vicki 5 years ago

Thank you so much for sharing!! There are so many of us out there with DS!!! I feel so normal! I have a similar story. I'm now in my 40's and I've had a normal life but the only thing I regret not doing is learning how to drive. I always thought that it would be just too dangerous for me. I now have 3 beautiful girls (no DS) and not being able to drive is a damn inconvenience to say the least lol!!! so many people with DS and driving..really i should have trusted my eye specialist at 18 when he told me that there was no reason why I shouldn't be able to drive!!!!


caz 5 years ago

i teach a 10 year old girl who i just found out has this.She struggles to see the computer whiteboard and datch balls etc in games and until i found this site |I had no idea why. Thank you!

How can I help her with the whiteboard issue?


caz 5 years ago

i teach a 10 year old girl who i just found out has this.She struggles to see the computer whiteboard and datch balls etc in games and until i found this site |I had no idea why. Thank you!

How can I help her with the whiteboard issue?


Wanda 5 years ago

Hi, I also have DS. Growing up as a child I never knew what it was. I was teased in school but learned to cope. Mine is in my right eye. Now I'm in my late 30's and I'm doing fine. I didn't realize that so many people had this problem. Thanks so much for sharing your posts. It's always good to know that you are not alone. To everyone who has this problem, continue to stay positive and remember that you can live a normal and productive life. Thanks


dil 5 years ago

It's so nice to read posts from y'all, i also have duanes syndrom, my father had it too when he was a child and in the teenageyears... but now somehow it kind of dissapeared from him. My doctors said there is no treatment at all, the future is insecure and even if they operated it could get me blind..

well, what can i say, i'm 18 years old, and i have it in my right eye. I am afraid of taking pictures, and i mostly avoid eye contact...

can you do something about this at all so if you have children in the future, won't get it too?

i mean it isn't really much of a big deal but at the same time it is....


ChaosBZ 5 years ago

LONG ONE HERE:

I'm 39 and have had DS since birth. Nothing was ever done about it. In college

I was finally sick of people looking behind them when I spoke to them due to my

head tilt - I was looking at them but they thought I was looking behind them...

So I got prescription prism glasses which did nothing.

Fast forward to now. I'm a 5th grade teacher, married, awesome kids, great

social life, etc. But my students always look behind them when I talk to them -

my annoying head tilt...

I used to have 20/20 vision, but that has gone down hill faster and faster with

each passing year - my affected eye leading the charge by a mile. The DS hasn't gotten worse, but my left eye's vision has.

I've had it! I can't play baseball: batting is impossible; golf also. I've

been playing guitar for a couple of months now, but my neck gets so tired and

sore turning too far to compensate for my DS affected vision.

So I tried playing with an eye patch. Wow. Even though I use reading glasses

and sometimes regular (non-reading glasses), my vision is clearer with a patch

over my bad eye. I tried wearing the patch while not playing guitar, and minus

some disorientation, I think it is better this way.

But I'm wearing a freaking patch...! Still, it might be preferable over always

breaking eye contact with people due to my eyes crossing, or stressing about

seating arrangements, or getting very frustrated when people look behind them as

I talk to them.

I'm NOT getting surgery - the thought makes me sick. But then again, I am so

sick of DS. I HATE it. It affects my daily life always - for 39 years! And

there is no cure - my eye is more a nuisance than anything and it will only get

worse if the trend continues.

So... any advice? Will wearing a patch really screw things up for me? BESIDES

LOOKING LIKE A PIRATE...

Ok, so I'm being dramatic. But still, if you have DS you know what a huge pain

it is. I feel at this point, an eye patch is preferable.

Might as well finally draw attention to my bad eye in a better way. I am so

sick of the looks people give me when they notice something is off. I am so

sick of all the photos of me with my head at an angle. I am so sick of not

being able to talk with someone on my left side and appearing to lack confidence

as I continually look away instead of twisting my head way too far or looking

cross-eyed.

Please share advice. Is this just a stupid idea? Will wearing a patch make

things much worse? Or am I onto something? You are the first group I can vent

to - finally people who understand what it's like! Thanks for reading


Tracey 5 years ago

I have DS and have known about it since I was very young. For many years it didn't affect me with my vision.....yes I had the cruel jibes from kids, hence loved school for the work but hated it for the people.

I was a shy child consequently and didn't have many friends. But then the unthinkable happened...my eye muscle expanded one day when I was singing my heart out in choir practice (always over compensated by trying to do well at everything)and my left eye was stuck in the corner of my eye.

To cut a long story short, DS was little known about in those days and the Doctor didn't have a clue. In the end took my dad insisting on a second opinion and ended up at Birmingam Children's Eye Hospital. I had an operation which was successful and my eye has been good for years.

Until the last 5-6 years when I have noticed and felt a difference in my eye. In the last 2 years this has got worse and now I am convinced my eye is on the move again.

So off to the docs again and eye specialist, but shit scared it will go again without warning one day.

Would really like to know if anyone knows if anyone has gone through surgery twice for this....think I already know the answer to it as a UK doctor told me a second surgery would be highly unlikely, but just wanted to see if anyone knew a case.

Just praying at the moment it doesn't get worse as remember the hurt of people's comments and looks, and the surgery wasn't good either.


Jodi Lane 5 years ago

It breaks my heart to read some of your posts. Kids can be so cruel when anyone is slightly different. I too have Duane Syndrome. It affects my right eye which can't move to the left. To see straight I have to turn my head which gives me terrible back and neck pain. My right eye is also slightly smaller than my left which bothers me cosmetically. I love reading all of these posts because I have never met anyone with Duane Syndrome.

I am 23 and have made it through school and college fine. I did not understand DS when I was young and just thought I could do something cool with my eyes. In high school I do remember a few mean comments about being cross eyed. I went to the doctor today for a consultation to have surgery to somewhat correct my surgery. I am very hesitant to get the surgery because there is no guarantee of it fixing my eyes at all. I am actually afraid I may end up worse off than I am now! Any suggestions?

I hate having DS sometimes but then I think of all the people who can't see or walk or hear or who have other debilitating diseases and I realize I am so blessed to be able to function somewhat normally! If any young people are struggling with their DS or being made fun of-I would love to talk to you! Thanks for all the posts guys, it's nice hearing from people who understand. ; )


Jenni 5 years ago

My two year old daughter has DS. She was diagnosed at one year of age. She has a "classic" case of it. Hers is not as severe as some of yours. She can't move her left eye outward. I noticed something "fishy" with her eyes when she was a baby. Took her to an eye doctor and they said she would out grow it. My husband never noticed it. At her first birthday I got a picture of her eyes doing it! Took her to an eye doctor. They had me start patching her right eye "good eye" and we have been patching it since....basically to teach her to turn her head left. Recently we had to switch eye doctors (closer to home) and the new eye doctor said NO to patching it does nothing. So now I am thinking of getting a third opinion.

I am very worried about how this may affect her as she gets to school age (reading, etc).

Thank you everyone for posting. Most of your stories made me cry and some of you are very inspiring and not letting anything hold you back!


maribel 5 years ago

Hello my son of 9 has RE. I noticed when he was born. It wasent diagnosed until one. His 1 visit to eye dr. Was very difficult for us. He was diagnosed so fast. The Dr. Was fascinted. We get him checked 1 a year now. He has a head tilt since a baby has never completely gone away. Now that he's 9 he understands, he doesn't want the surgery. He says he's a bit diffrent and that's ok because no one is perfect anyway. I just wish more can be done for him. Picture day came at school I got to see the picture and you can really see his eyes. In one u can notice him slightly crossed eye. In another his left is not centered and in another his head is tilted. He has mild DS.


Maribel 5 years ago

It's me again w the 9 year old boy. I'm so proud of him. He plays soccer, plays violin, loves to read, over all a very happy boy that moves life.


Alexis 5 years ago

I have DS as well. I had surgery to correct it at 11 months of age. I still get double vision when I am trying to read something, say, on the tv. It gives me severe headaches, which is not fun. I also cannot see 3D. I've got a smartphone with 3D capabilities but never use it because I can't see 3D!! It's frustrating how some new movies are coming out in 3D only, and I end up paying extra for something I cannot even see. So I pay $3 extra to wear some stupid glasses so that the screen looks the way it normally does in 2D. Yaaaaaaaay. Even though I had the surgery to correct my eyes, there are still some limitations. I would really love to correct the double vision, and reduce some of the headaches!


MomaDonna 5 years ago

My baby girl was diagnosed today with Duane's at age 10 months. I have been crying all day, until I found this. Thank you to all who've responded and told your story. It lets me know the different possibilites in her future and what I need to do to support her as a parent. I know longer feel hopeless.


Maisie 5 years ago

I'm 20 and was born with ds! I would never have surgery as I'm such a wuss and to be honest I have never been bothered by it! After years without patches I'm having to start using them again as my vision is getting worse! Anyone got any words of wisdom? Also does anyone else have the ds smile squint? X


Brett 5 years ago

Yay! I am not the only one on the planet with duane syndrom. I am a twelve year-old boy and enjoy to read, play guitar, and play video games. With my duane syndrome, people at school are constantly calling me cross eyed, and saying I have a lazy eye. My response is always the same, "I know what I have, and you dont so leave me alone". My real problem with duane though, is that I have a hard time focusing my left eye, so it takes me longer than most people to read, or when I am looking at things (like the neck of my guitar) up close, my left eye starts to pain me. My real question here is, does anyone know if there is a special type of lense that will help me with focusing my left eye? I would really be appreciative of any feedback, thanks.


Becky O'Brien 5 years ago

Hi Everyone,

Its so good to hear others have this condition. I am 18 years old and have just started my first year of uni. I had always accepted my eye problem and from a young age realised that people suffer from much worse things in life. However, as I am reading more than I have ever done at uni, I have started to notice my vision is decreasing and my left eye has moved further towards my nose. I can live with my eyes looking slightly odd to other people but this change in position has meant my vision has decreased and I am getting frequent headaches. I have researched the operation available to try and help the eyes. Has anoyone had it done? Any advice on the op will be great! Thank you :)


Jaceeka 5 years ago

I was diagnosed with Duane syndrome before I was a year old. I'm now 34 & it is a normal part of my life. Admittedly as a child I got the usual comments like cross-eyed, lazy eye, etc. it of course bothered me because kids can be cruel, but as an adult, I rarely remember I have it. Occasionally a younger person or child will ask, but most people either don't notice or are too polite to mention it. My eye sight is near perfect and I do not have to wear glasses. I'm the only one in my family with this condition.


josie 5 years ago

I was born with Duane Syndrome. Im almost 12 now and all my life i was poked and prodded, videod and many photo's were taken off me. At my local hospital, im one of the main reasons my docters even know about it. Im very wary of myself and i do get noticed at school alot, get pointed at. This makes me worse. DS effects my balance, hearing and concentration. If i look to the left, the left eye stays and i see double. My left eye-lid is also covered up so you cannot see it. Surgery is now becoming an option now im older, but it feels very comforting to know im not the only one with this condition. Im greatful that you can post this information as i feel more confident to know im not alone in my suffering, Thank You (:


ally 4 years ago

i have the same condition i'm 16 and i want to become a model but im afraid of taking pictures cause of this condition :$ it is in my left eye as well and i cannot turn it to the left and my left eye always looks smaller?

i heard the very same comments ("cross eyed") when i was younger even today occasionally and it sucks. i just make excuses like "i have something in my eye" or "it's just allergies"

i really enjoyed reading this as now i know i'm not alone...here's to everyone who has this condition! just remember we are special and unique because of it :)


Marc 4 years ago

Hey everyone,

My name is Marc and I am 25 years old. I have DS in both eyes. For me, both eyes can only look inwards and not outwards. I had surgery at a very young age and don't remember it at all. It was nice to read your stories and hear about others out there with this condition.

It has never really affected me playing sports as I have always been very athletic (skateboarding, hockey, golf, baseball, martial arts) although I think it is more noticeable when playing sports and occasionally people will comment on it.

I feel self conscious of my condition sometimes but try not to let it bother me. I wish everyone dealing with this condition all of the best. Make the best of the things you can control and don't worry about what you can't control

If anyone wants to talk, feel free to email me. sheridan.marc@gmail.com


Jimmy 4 years ago

My 9 yo daughter also has DS in her left eye. She was also born with another rare birth defect which thankfully wasn't serious.  It was taken care of with a minor surgery when she was still an infant. Does anyone know if other issues can go along with DS?  It's just worrisome that she was born with two rare genetic defects.  If so email me at jimmy_long@ymail.com


kalimu 4 years ago

Thanks for posting about DS, I can relate. My son and I both have DS. He's seven and I am 43. His old eye doc said that DS is not genetic. I asked "how is it that we both have it then? She insisted that it is not genetic. Well I took my son to see Dr.Horton and UCSF medical center. He enrolled us in a study and they are now saying that DS is genetic. They also said that because of the new information, they are closer to finding a cure. I'm sure that does not mean that we'll all be cured tomorrow, but I think that it is good news all the same.


Mary 4 years ago

I am in my 30s and have DS. This problem, for me, just keeps getting worse and worse every year. The eye specialist says it shouldn't, but it certainly has. She also told me that she has only had a handful of people in her many years of practice with this condition, so she really can't know too much about it. In the last few years, my eye has started turning outward less and less. It has gotten so bad that I can't even look straight anymore, and I used to be able to. So, now my head tilt is a constant thing rather than just on occasion. Worse than that, I live in pain (headaches, neck pain, shoulder pain, back pain) everyday due to this. I have read that many others do also, especially beginning in their 20s or later. The pain, frustration, helplessness, and worsening problems are almost more than I can bear anymore. It is really hard to function on a day to day basis, even to get out of bed in the mornings. I have tried many different suggested options to help, but nothing seems to. I wouldn't wish this problem on anyone. As a child, my only worry was people making fun of me (which did happen, of course). Now, that would be the least of my worries. The pain just never ends.

spurs2003@live.com


Jamie R 4 years ago

my name is jamie and i am 19 years old and i have ds and untill today i was scared to death cause i had no idea what it could be i was to scared to get it looked it because of what it could of been but this is the first thing i have read on it and i feel so much better that i am not alone. but now i can move on and feel better about it but i wish u all the best and lets hope they can find away to fix this!


erin 4 years ago

I have Duane syndrome though mine was diagnosed when I was three. I don't have to do constant head turns and deal with it. I had a training doctor diagnose mine since he had just finished a paper on it, and to fix the seeing double and the "head turns" my eye doctor recommended a special type of glasses that keeps me from seeing double. I am nineteen and I don't have any problems with my syndrome anymore due to the help of glasses. It is a scary thing, but there are ways to cope without having the head turn


Allyson 4 years ago

Wow, I am overwhelmed. I am 33 with scoliosis, Duane’s, headaches and neck and back pain. I have asked doctors in the past if they thought there was any connection between Scoliosis and Duane’s but have not gotten any answer about it. It’s interesting to me to see there are several people dealing with this (especially since Duane’s is so rare). I was not diagnosed with Duane’s until I was in my mid twenties. I was suffering from horrible headaches and met with several neurologists and doctors that then led me to a specialist at John’s Hopkins who diagnosed me (I am not a fan of that doctor). I was diagnosed with Scoliosis at age 13 and ended up getting Anterior Spinal Fusion Surgery at age 18 (my curve is also rotated which caused some discomfort and cosmetic issues). I have also had three separate eye surgeries (one in 2nd grade for strabismus correction) and two later in life after the diagnosis of Duane’s (2005 and 2010). I just met with the surgeon this past week since I haven't been feeling well (things are double and blurry) and he basically told me I regressed (in just a year and half) and am worse than I was prior to the surgery. I was devastated. He also told me things will get worse with age and recommends more surgery but has no explanation as to why it failed twice before. I have an appointment with a different doctor for a second opinion later this month. I do not feel like the eye surgeries have helped me and I continue to struggle on a daily basis (getting worse as I get older). I have chronic back, neck and hip pain and work with a pilates trainer once a week as well as a massage therapist every other week. This offers short relief but ultimately the visual stimulation causes me to tense up again fairly quickly. I have managed to overcome a lot and run a successful business and have an great marriage and social life but I do fear things getting worse. I do agree that strength training (especially core muscles) is a big help as well as massage therapy but my question is has anyone found relief for their vision? My doctors can’t seem to get that everything is connected so they are only focused on treating the one thing they are specialists in which in turn is not very helpful. Thanks in advance for listening to my story and I appreciate any response back.


jamie r 4 years ago

i have a qustion for all. do contacts help?


Nav 4 years ago

Thanks so much. It feels good to know that someone understands what I've been through. I'm 24 now, was born with DS and not many people notice it. I was teased at school but nothing after that. Live life to the fullest don't let this bring you down. It's nothing compared to some life threatening diseases.


Kristen F 4 years ago

I also have Duane's. I'm 20 years old and I had surgery at age 3. I still have to do the head turn slightly because I have double vision looking straight on.

Before age 3, I had to turn my head all the way to the side to be able to see. My parents say I would trip and fall a lot because I couldn't focus on where I was going.

I am very glad they decided to get the surgery for me, for it is barely noticeable now. I have the habit of turning my head to the side in order to talk to people next to me. It probably appears odd to them when we are sitting very close. It gets the job done though without people noticing my disorder

krisrae18@hotmail.com


Matt Hammer 4 years ago

I know how you feel. I too have duane's syndrome. It affects my left eye turning out. Imagine how hard it was to play baseball as a kid and be a right handed batter.


ritashepherd4055@msn.com 4 years ago

i am now 66 years of age and like you was born with duanes syndrome . i was lucky i was never bullied ,and although it bothered me at times ,having to move my head so people would not see me crosseyed has never caused me great problems . in the early days doctors did not seem to know about duanes ,and in fact had an op in my twenties as an eye specialist thought i hah a restricted muscle that need cutting . needless to say op was of no use. !!! in my thirties a specialist gave me the correct diagnosis ,. nice to have a name and know that a few others out there also have the same .

have been considered attractive all my life and if anything turning my head apparently has been considered a nice quirk ,and the fact that i prefer to look people straight and look at there eyes has been mentioned in a nice way .

happened to come across your blog today after deciding to look up duanes after many years .

have enjoyed reading your comments ,as feel we have led a similar path

regards rita


Mark 4 years ago

Always interesting to find another DS sufferer. Both of my eyes are affected, but I'm lucky in that the "set point" for both of my eyes is straight ahead, so I only see double when I try to look to either side. As a little kid I thought everybody saw double when they looked to the side. I just naturally learned to compensate by turning my head. The only time I really notice it is if I am reading when I am really tired. I have often wondered, though, if my ADD, which is caused by problems in an area of the brain near the neural nucleus that doesn't form right when you have DS, is related to my DS.


D'angelo 4 years ago

I Didnt Know So Many People Had This Problem, I Have It Too, Im Also 16 years old, I Was Suppose To See A Surgen Today But They Rescheduled I Wanted To See If Anyone Got The Surgey Done Before... I Have A Girlfriend And Was Shpcked Wen She Told Me My Eyes Looked A Different Way. A Week After I Went To See The Eye Doctors, They Told Me I Was Jus Realizing I Had It I Remember Getting Made Fun Of It Sometimes But Not To The Point hey Madee Me Care. I Wanted To Get Rid Of It But I Heard You Can Go Blind If The Surgery Goes Wrong Is It True?


Billy 4 years ago

Hi, I a found these stories to be inspirational. I do not suffer from D.S. but from estotropia. Both eyes work independently but not together. When I move my eyes, one moves and the other one does not. It was not something I noticed until a couple years ago when I saw some of my pictures. It definitely made me self-conscious.

More recently, in a children's class I teach, a new girl said out loud, "Why are you looking at the wall!?" I was mortified! Adults more than likely had noticed but were too polite to say anything. But children have no filter and many have not seen this before. I cannot look people in the eye and talk to them for more than a few seconds and one eye wanders. This makes it hard to teach and be a "people-person." And I have noticed people looking behind them when I talk, probably thinking I am looking at something behind them. It is frustrating to say the least.

I have considered surgery but have not done it for a few reasons: 1)My eyesight itself is almost perfect. I only have trouble reading small print and don't have any pain at all. I don't want to risk my vision being impaired. 2)Cost 3)I have asked a few of my female friends who have known me a long time if they ever noticed. I was shocked to hear that they said they had not. I was gauging to see if my condition would turn off any potential mate.

I posted also because I would like to find a group and discuss issues with people who have this. Any suggestion is welcomed. I don't know anyone who has this. Thanks!


Katrina Roebuck 4 years ago

Hi my husband has Duane's too but his eye goes out toward his ear he has been told all his life that it can't be fixed glad to hear your story and outcome. He is now 32 and is going to have another exame in june. Can you see as good or better after the surgery?? Do you have any problem now after it that you didn't before?


Minal Lemos 4 years ago

My Daughter has duane's syndrome. Your article is very inspiring. Need to connect with you, as i need special guidance in upbringing her. Please share your personal ID or you can write to me at minalplemos@gmail.com


Cindy 4 years ago

Good blog. I am 45 years old and I also have DS. I was first diagnosed with it at 6 months of age. When I got older, my parents decided against surgery because my left eye (the effected eye) was midline, and I had learned to compensate very well by turning my head. When I was old enough to decide for myself, I also chose not to have surgery.

My opthamologist, a wonderful guy, told my mom early on that with Duane, if the patient's affected eye is midline or close to midline, they usually have binocular vision (they don't see double looking straight ahead). However, with Duane, you can't cut both eyes to the left and right like most people can. A person with Duane Syndrome must turn their whole head from side to side in order to look at something with binocular vision. It is during this head turn that other people notice something is wrong, and usually they think you're "cross-eyed", because they see one eye turn normally while the other eye either doesn't move at all, or it has an upshoot or downshoot until they are looking straight at whatever they turned their head to look at. My doctor told my Mom that most people with DS could live a very normal life. However, socially, especially in childhood, it could be an issue. Kids can be cruel. So he suggested that she have me sit in front of a 3-way mirror and practice closing my eyes before turning my head to either the left or right, so that they are closed during the head turn, then opening my eyes after turning my head. My Mom took his advice and when I got old enough, she explained DS to me, and explained how I would be starting school one day and that kids can be mean if they see anything different about someone. So I practiced...in front of the mirror; at the dinner table when everyone was talking to each other (people expect eye contact when they are talking to you); everywhere we went... I learned to close my eyes, turn my head, open my eyes, and make eye contact in one fluid motion, until it became second nature. I didn't have to remind myself or think about it.

By the time I started school, I was so good at this, that hardly anyone had any idea there was anything wrong with my eyes. The only time anyone noticed anything, was when I was extremely tired, and failed to completely close my eyes while turning my head. If they asked, I just told them the truth. I did have some people ask if I was deaf or hard of hearing in one ear. It took me a while to figure that one out. Finally, I realized they thought I was turning my "good ear" toward them to hear better...LOL.

One thing parents may be stressing over is whether they should consider surgery for their child or not. I personally wouldn't consider having surgery done early on. There is no time limit for having the surgery. One major concern would be making it worse. If they aren't experiencing visual impairment, and they seem to be able to compensate well so that they aren't suffering from any serious social factors, I would leave the decision up to them when they are old enough to fully comprehend all the pros and cons. That is what my parents did and I chose not to have the surgery. I'm 45 now, and I don't regret it. I might also mention, my doctor's son is my opthamologist now. He asked me last year if I had changed my mind about having the surgery. "It's not too late," he said. We both laughed. No...no regrets.


larissa 4 years ago

I also have DS and it disturbs me socially. I am very sad about it but it was what God wanted for me. Sometimes I think I'll get depressed thinking about it much because I'm shy to make many friends and someone to notice. I think I give much importance to it because I'm 17 years old and there is great pressure for you being sociable and outgoing. I confess that I have not much difficulty in hiding, in fact almost nobody notices. I was very happy to find this blog because it really helped me psychologically, and I had never seen anyone with this same problem


Aaron 4 years ago

Went to a new eye doctor today and was told that I have DS. I'm 30 years old and have lived that long without people telling me specifically what this condition is or that it even has a name. For the longest time I've been told I was lazy eyed. One doctor would tell me I have astigmatism and then another would tell me that I don't.

My right eye is affected which apparently is even more rare and has limited ability in looking in and has almost no ability in looking outwards. What's interesting is how my right eye has perfect peripheral field. It's as if my eye and my brain has learned to adapt and compensate for this condition which is why I've been able to maintain total binocularity except for objects that are directly in front of my face which at that point my vision begins to cross. On the other hand this is also why no one's ever diagnosed it because I've always passed peripheral field tests so doctors just ruled it out as a lazy eye. Throughout my life I've encountered people who are crossed- or lazy-eyed and somehow I knew that mine was different from either one.

Part of me is relieved to know that that I'm not the only one with this condition and that it even has a name. Like most people with DS I've learned to compensate for this by turning my whole head to the right or winking my right eye when I have to look quickly to the side to avoid crossed vision and to keep people from freaking out when they see my right eye cross and retract into its socket. Otherwise I have a perfectly normal right eye which has even learned to compensate and adapt over time.


Marc 4 years ago

Hello I have a question for people afflicted with Duane Syndrome, just like the author of this hub, if your Duane doesn't allows you to move outward (horizontal movement), can you move it to secondary positions (diagonal, up-left or down-left)?


Brian 4 years ago

Hey everyone! This information has been awesome to hear about! I am 20 years old,m and have DS in BOTH of my eyes! I am unable to abduct (look outwards) with both eyes. Since it is in both eyes, it is generally less noticeable than if was just in one eye. Besides a VERY slight inturn of both eyes it is unnoticeable, and have never had anyone wonder about it, or question me. Having DS in both eyes makes me among the 2% of DS patients that have both eyes affected, and I have learned to accommodate for my very lacking peripheral vision by turning my head. I have to be very careful to check my blindspost while driving, as even though I can see in my peripherals, I cannot focus on anything in them.

The most challenging aspect of having both eyes affected is reading. I have to move my head to read as my span of vision can only read about 3 or 4 words before I cannot focus, so I look pretty funny when I read. DS has resulted in a lot of neck pain for me, as I have to move my head like 90% more than the normal person. I see a chiropractor weekly for this, which really helps :)


Lauren 4 years ago

I myself have duane syndrome. When I was younger it was confused with a lazy eye and for months I had to wear a patch over my right eye to strengthen the muscles in my left eye. I recently was fired from my job being told I was "overly emotional" because my assistant manager rudely asked if I was on medication. When confronted by my g.m. to protect herself she said "I didnt mean does she take medicine for her moods, but what I meant was does she take medication to correct her eyes" I was appauled. Not only was I insulted once, but twice. My MANAGER SAID NOTHING in my defense. Afterwards I never worked well with her and ultimately I lost my job for not being a "team player" I am twenty five years old.. I deal with stares, whispers, ignorant reactions to my eyes not moving correctly. I continue to fight my self-esteem although Im told by the people I love and friends that Im beautiful and because of the way I angle my head its hardly noticable. Will they ever find a surgical cure for this?


Ting 4 years ago

My 1yr old boy was diagnosed with Duane Syndrome yesterday. Comments and stories really Helpful. Thank you


Gary 4 years ago

Hello

I have Duane Syndrome, at least I think I do. I am 58 yrs old, male. Just found out what it is called. After all these year's. Went to a eye doctor when I was 8or9yrs. old. Not much came of that. I was to young to know. I think there was nothing they could do. What are my symptoms? My left eye will not look left or outward. It is a little off centered when I am looking straight ahead. When I am looking straight ahead my head is very slightly turned I have noticed. Just a few degrees. No problem up or down in both eye's. Right eye is normal. I don't see double unless I make my self see double. That is looking straight ahead and crossing my eye. I don't see double when I look to the left, although my left eye isn't looking left. But I do feel it is seeing a little towards the left and not just straight ahead. I don't get neck or back pain from it. I avoid looking towards the left at someone, if I do I turn my hold body or my head so I am looking straight at them. Certain position's in life can be hard like dinner tables and talking to the person on your left. I just try and turn my hole body. I favor looking slightly to the right when talking to someone. I have no problem reading. I close my right eye and try to force my left eye looking left. I feel it's an excersize I do. Don't no if it benefits from it. Some people notice I have an eye problem and some don't. If I am around them long enough they do. I favor wearing sunglass's during the day. I wish there was a fix, but I have learned to live with it and at least I can go out and watch the sunset with all it's color and walk to it and drive to it and hear it. God bless you all. Some day I'll have perfect vision.


hightide68 4 years ago

Just posted above my email is garylinville@att.net


Vikki 4 years ago

My 3 year old grand daughter has this syndrome in both eyes. We are seeking help via Meta Medicine if anyone is interested. Blows your mind!


Debs 4 years ago

My 4 year old daughter was diagnosed today with Duanes Syndrome, it appears it is in the right eye and is type 1? I am desperate to find out more about it and have found this hub very interesting, thanks


carina3 4 years ago

My daughter is 4years old, with Duans S. It is her left eye. I also found this hub very inspiring. I think about how it will be when she starts to read and write, where she should sit in the classrom, sports.... Thanks for writing all this!


Paul 4 years ago

My son is 8 months old and has just been diagnosed with Duane's Syndrome. He also has a twin brother that has no symptoms at all. It has been a long two months since we realized their was something wrong with our baby boy. It wasnt his eyes that concerned us, but his hands. We noticed that his thumbs appeared a little different and asked our pediatrician about them. He has hypoplastic thumbs, which means his joints are underdeveloped and dont bend completely. After meeting with a orthopedic doctor, genetists, cardiologists, radiologist, and finally opthomolgist, Duane's was diagnosed. We also found out that he has a right aortic arch that isnt really a concern for the cardiologist claiming his heart looks great. I was just wondering if anyone else with Duane's has experienced any of these other symptoms? Also, it appears that he has it in both eyes and looks forward perfectly. Reading these blogs have given me SOO much comfort and insight in knowing how this disorder will impact his life. Again, through these posts, you show and share your stories that will inspire others with Duanes/family members to live fruitful, meaningful lives. I would like to thank you all for sharing your stories that have given me so much comfort. THANK YOU ALL!!!!!!!!!!!!! Here is my personal email pjs3478@aol.com if you would like to give any other advice to a concerned parent raising a child with Duane's and how I could assist him as he learns, develops, and interacts with others.


Kathy 4 years ago

I have Duane's class C in my right eye. I also have an injury to my left eye that resulted in strabismus and for many years my double vision was attributed to this injury alone. Duane's was not diagnosed until college. I have double vision most of the time and have prisms in my eyeglasses to help me fuse my vision. I am in my late 40's now. I am not sure if it from the Duane's or from the injury, or a combination, but driving has become more and more of a challenge. I avoid highways, as I cannot stabilize my vision quickly enough for merging traffic. In fact, I avoid driving faster than 40 mph! This is very frustrating. I also find the patch very necessary. I have vinyl clings that I cut out and put over one lens of my glasses (I need glasses, and since both eyes have issues, I have avoided any surgery, including Lasik). I have a wonderful low vision specialist who recommended an opaque contact lens. I work with computers and this lens has been a lifesaver! I also find I cannot watch TV without covering one eye (I find covering my Duane's affected eye most helpful). I have no useable peripheral vision, and have only seen 3D occasionally. I still judge distances very poorly. It is especially painful to look up, and ordering in any kind of fast food place is a real pain, literally! I have gotten used to people looking at me weird as I cover one eye and squint to read the menu. One thing that always astounded me was before I found my low vision specialist, all my ophthalmologists had vision tests projected too high up for me to see, and they had no way of lowering it! I also find the new light bulbs to be be very hard on my eyes. Another challenge has been finding optical departments that are willing to make your lenses 3 or 4 times. If it is not exactly right, I cannot see! One eye is lower than the other and eye measurements are critical. As I age, my eye muscles continue to weaken, and I now have about 4 different pairs of glasses for all different uses: driving, computer work, reading, and general use. Actually, when doing up-close work like reading or sewing, I now find it easier to take off my glasses. When people ask me what Duane's syndrome is, I simply say, "my eyes don't work together, and I see double." I am surprised there are so few sites that discuss covering one eye. Such a simple solution. My eyes tire quickly regardless, either from having to fuse my vision all day or from using only one eye. I am blessed to live close to work and in a city where I can get anywhere without once driving on a highway! It has been a challenge, but then everyone has challenges. This is ours!


anasim 4 years ago

I have the same issues except for the eye not being centered. And the double vision. Is there s surgery for it?


Miro 4 years ago

Do you know is it possible to have eye disease which makes world mirror world for you. My old teacher once told me about it. But I never checked it out.


cherrio726 4 years ago

I'm 16 and have class A Duane's, but in my right eye. I have a slight he's tilt, and my vision in the affected eye is perfect, while my other eye is nearsighted. I was teased in elementary and middle school, but high school has been fine. I've considered surgery in the past, but since my case isn't severe have decided against it. It's become a part of who I am, and I don't think I'd be the same person without it. Driving hasn't been a problem, except for the fact that I can't drive a two-door because the windows are too low and I have to strain to see out of them! The only problem with sports that I've had is spotting while turning in dance. I've started to notice my neck and back hurting more and more, but haven't considered Duane's to be the reason of the problem. It's always nice to know that you're not alone, no matter what your situation, and that there are people who haven't had surgery and have been fine. Thanks for sharing!


Elizabeth 4 years ago

I am 40 and just ha a muscle surgery on my left eye. I was never diagnosed with DS back in my country so I lived with this allmy life until I moved to the US and start going to mane eye doctors. On of the many I went told me that I shoudl go to a pediatric ofthalmologist as this is a born syndrome and they are specilist for it. If you are a grownup visit a pediatric this is a 7 minutes procedure to you muscle straighten your eye but it is not 100% fixed as there is not cure for this syndrome :(


elf 4 years ago

I'm 24 with duane's I in my left eye - compensating for this as a child resulting in a strong head tilt and poor posture, which I am still working to fully overcome; these days it is mostly just the head tilt that I can't seem to get past (maybe for the better aesthetically; people don't seem to notice? or they are too nice to say anything), but the stiffness in my neck has been driving me insane lately, and it is still very difficult to square my shoulders. Beyond this I am generally happy, outgoing person. I did struggle with depression through high school and even through early college, and while there may have been many contributing factors, I do believe much of it was linked in some way to the Duane's... and an overall sense of low self-esteem.

To the worried parents out there: I recall the doctors telling my parents that there was no cure and I would adjust naturally. And while they mentioned therapy as an option, they did not seem to think it was necessary (or even effective) and that was the extent of the advice given. I'd recommend just watching your child carefully and working with them on their posture if you notice that they are over-compensating. I used to be unable to run fast or long because my body was so out of balance; doctors told my Mom that I had scoliosis. I was never really aware of this nor bothered to try and fix it until college - these days my back looks and feels much straighter and I cringe when i look at old photographs. I wish someone would have tried to help me out when I was young! rather then assuming nothing could be done. So be supportive, parents! Good luck and stay strong everyone! I'm sure that we will all have perfect eyes in the next life.


Sara 4 years ago


rick 4 years ago

There is a book called disconnected kids by Dr. Robert Melillo page 123

In the book it explains which eye is connected to parts of the brain (left side or right side).

It is the brain that is imbalance and the stronger part of the brain is what makes that eye stronger as the stronger brain ignores the weaker one. It is hard to explain.

There is also eye test and eye exercises to strengthen the weak eye or brain.

Hope this helps at least understand how the eyes and brain are connected.


Half Deaf 4 years ago

Hi! I was happy to find this because I have Duane Syndrome. I am 15 and it has been very unpleasant throughout school. Now, I joke with it. Once, I went to the ER after falling off a horse, and my ER doctor did the "Follow my finger" thing, and I freaked him out. He thought I had brain bleeding. After that, I kind of made it a joke. I have learned to live with the right eye not going right, but I am also one of the ten percent of people who have deafness as a result of Duane Syndrome. I am completely deaf in my right ear. That has been more of an issue. My friends have gotten used to it. They help me cope for the most part, but there are always gonna be those certain people who will try to tear you down. I would rather have a few rude people than the sympathy card all the time though. I live with it, so why can't they? Doctors have been talking about surgery for years and now are serious about it so I can drive better.


Denise 4 years ago

I am 54 years old and until recently have gone through life with a "lazy muscle" in my left eye. Only recently during a routine eye exam did the optician ask me if I had heard of Duane syndrome........which I hadn't. I can't understand why no one had mentioned this before but now at least I know I am not alone. Your article rings true to me in so many ways......thank you.


moonlake profile image

moonlake 4 years ago from America

You have had lots of comments on your eye condition. Good hub lots of information. I put one up on my eye condition and barely got any comments so I figure there must be very few people with it. Maybe my hub is just bad. Anyway your hub is good. I voted up.


Paul 4 years ago

Just wondering if anyone has or heard of Duane Radial Ray Syndrome or Okihiro Syndrome? They are associated with Duane's but there are other anomalies that are linked with it. Such as heart defects, hearing loss, hand/thumb/wrist anomalies, etc...


teena willis 4 years ago

thanks so much for the info. My granddaughter has Duane's syndrom which was diagnosed at 11 months. Every year her eyesight continues to worsen, because of compensation, her depth perception is not very good either, which causes her some clumsiness. At 10 years old she's becoming very aware of her need for thicker glasses. Are pepole with Duane's syndrom able to wear contacts ?


kim 4 years ago

hi, I have the same condition , I was wearing glasses sine 3 yrs of age I am 28 years old now and My same doctor after 20 years finally reffered me to a speialist to run some tests and found that I had duanes as well , But , and it suks I never had the surgery beause he assured me that within 1-5 yrs it can come right back , I cant see with 3d glasses either lol I think it was the worst thing growing up , when I had to close each eye and seen just blue or red lol , well I also have to turn my head slightly , or hate the people that say why dont u look at me when i talk to u , people hardly notice now at 28 i learned to deal with it , but sometimes I get bad headaches too , but I love how u explained this HUB ,

Jersey


Ronald Wintrick 3 years ago

I'm best selling author Ronald Wintrick. Eight best sellers. I have DS. It sux but I cope. I smoke mary j for the headaches.


ewa ledeboer 3 years ago

hi, thank you for your blog. my baby boy, 18 months old, was diagnosed with duane's syndrome yesterday. the doctor told us not to worry and not to think about it as a disability. my friend says that a little squint is very sexy, lol. well i hope that duane's will not cause my son to be bullied but it will teach him to love others and treat them as he would want to be treated.

best christmas wishes to everybody :-)


happytobeme 3 years ago

Like many of those who have commented I encountered teasing as a kid. To compensate I had a face turn to the left. As I aged, the eye drifted outward even more due to scar tissue and I began to have some neck issues. I am in my late 5o s and just had surgery on Monday. I am thrilled with the outcome but do understand there is the possibility that the eye may return to its earlier position.

My advice is that if it really bothers you, find a good eye surgeon and give it a shot. I wish I would have found my doc sooner, he is fantastic. To me the very small risks are worth the outcome so far. I will continue to share my progress.


Georgia 3 years ago

Im 15 and I have DRRS and i hate it, it's affected both of my eyes and i have a very small thumb on my left hand and a large finger-like thumb on my right which has no knuckle and to bend it i have to roll it like a ball-and-socket joint. Luckily, I've never been teased but a few people have made nasty comments which hurt even if it's just asking if i have a lazy eye and i dont want to explain that i have a condition. I have a great life and play 5 instruments that my doctor said i would never be able to play which im rather happy about, thank god my mum didn't choose to remove my thumb! its nice to know i can lead a perfectly normal life but i'm still extremely shy and afraid of showing people my hands which is hard as you have to use them to do everything every day. I consider myself lucky thay you cant tell i have DS in my eyes and that i dont have to wear glasses all the time to keep my eyes straight.


Paul 3 years ago

Gerogia, thank you so much for sharing! My son has duane radial ray syndrome very similar to what you just shared. He is going to turn two in July. The duane's affects both of his eyes and is missing the joints in both of his thumbs. As a parent, I wonder what sort of obstacles he will have to face growing up. He already seems to have a challenge when it comes to balance when walking on multilevel surfaces and also grabs objects using his index and middle fingers. Thankfully, his eyes are set forward and doesnt have any issues with seeing double. Any advice in helping this little guy along would be greatly appreciated. Thanks in advance!!!


Vicky 3 years ago

Omg! I never knew duane syndrome was ao common, my mum never really explained why my right eye is the way it is I only found out a few weeks ago the name of my condition and I'm 23!


Taylor Levit 3 years ago

I suffer from Duanes Syndrome as well and I have basically the same abnormalities. I have to slightly turn my head to the left or else I see double when my head is straight. I have had chronic neck pain in my neck and shoulders for about 8 years now. I am 29. I don't know if I want to undergo surgery like you did because I am scared. Was it worth it? I am tired of being in pain.


Lauren, NJ 2 years ago

My son is 10 months old and was diagnosed about 5 months ago. We live in NJ and have started to take him to 'The Wills Eye Institute' in Philadelphia. He also has been seeing a pediatric ophthalmologist for about 5 months.

Both doctors have said he seems to have Esotropia, bi-lateral Duane's and possibly Sixth Nerve Palsy. He has glasses to help with focusing (he is also far-sighted).

Have any of you had any corrective surgery? If so, can you tell me a bit about it? Can you recommend anything to help treat the Duane's? I am heart broken. I know this isn't that big of a deal. Many others have it MUCH WORSE. I just worry because kids are cruel. I don't want him being teased, you know?

Any information you are willing to share would be greatly appreciated!!

lauren.wolff22@gmail.com


Paul 2 years ago

Taylor Levit, I would like to learn more but not so much on a public forum. If you feel comfortable, please send me an email at pjs3478@aol.com as I would like to learn how I can help assist my son through any challenges that he may face with duane radial ray. Also, I have some knowledge that I can share with you from what I have learned from my sons doctors.


Johnb465 2 years ago

Real nice design and great articles, nothing else we want kebgcgdkedde


Akbar 2 years ago

WoooooW.... This has been here about 5 years..how interesting!

I'm really impressed that people with this problem get along well, cause I have it too, but I can't take it anymore. I'm 24 and I'm from Iran. I've been called cross-eyed the whole of my school days. To be honest, the torment that you would never date with hot girls, busts me up.

I've lost hope...


Eve White 2 years ago

Some excellent insights here into what it's like to live with Duane Syndrome. My 5 month old daughter has just been diagnosed with type 1 DS - her left eye will not turn outwards. I am interested in hearing from anyone who has been advised to do eye exercises / eye patching - I would greatly appreciate any communication - evewhite@hotmail.com


April 2 years ago

Its nice to know about this. I am 26 years old. I have duanes in both eyes. Cant turn them left or right. Have to turn my head to look at people. I also went through the name calling. Lazy eyes and cross eyed you name it. It bothered me for so long i still dont look at people in the face very much. Even after ive learned to control it over the years to where its not that noticeable. I had no idea there were others like me. When i found out about it there wasn't much information about it when i was young. I am glad to know. For the young ones out there just going through this stay strong because we all are beautiful.


MJ 2 years ago

This has been by far the most active post I have ever seen about lonely little Duane's Syndrome. It is nice to see though.

I'm thirty years old and my Duane's was discovered when I was a baby, as it is fairly pronounced in my right eye. I am also completely deaf in my right ear and have an extensive congenital deformation of the cervical spine (Klippel-Feil anomaly). These three issues together make an umbrella syndrome called Wildervanck. It is one of the recently (2002) discovered CCDDs, or congenital cranial dysinnervation disorders. This means that several of the cranial nerves have not developed properly, resulting in various possible symptoms. This definition replaces the former understanding of Duane's as primarily a problem of the musculature around the eye.

It's not my intent to frighten the people here, many of whom seem to have issues strictly relating to their eye. For others with a more complex constellation of symptoms, however, I suggest looking for more specialized information, especially from NORD, which studies rare disorders and from Boston Children's Hospital, which has been conducting a years-long study into the CCDDs.


Sarah 23 months ago

I have had DS my entire life. No one else in my family has this condition, nor do my children. I have never sought more than basic information regarding this condition, and I love how this article has enabled so many of us to connect. I was searching DS looking specifically for symptoms resulting from the condition. I have one that is never listed, but am curious if anyone else experiences this - I have developed some eye pain and discomfort in the the affected eye (left) over the past few weeks. I have lived with this condition my entire life without any incidence (except for when I see a new optometrist - HA! They love it, so rare!!!) , and was looking for others with the same disorder to see if they experience any discomfort in the affected eye (or eyes) from time to time. It feels like eye strain (probably from watching my son's basketball tournament looking left, right, left, right) but am curious. My right (unaffected) eye is completely normal and pain free. Thanks for any input!!! BTW - loved reading your comments referring to it as your "party trick" (so true, a smash hit in college!). Also can totally relate to having to seat yourself to the left of people to avoid the annoyance of body turning so as to not "cross" your eyes while talking to them :) I have learned to just come straight out and tell them - and they are always very accommodating and interested!


Rose 23 months ago

I am 15 years old and have Duane's in my left eye which stops my eye from turning left and also causes my eye to be slightly off centre. Apart from having to sit in a certain position in class and not being able to look at people to the left of me when they are talking, having DS hasn't caused any major troubles in my life until recently when someone started teasing me about it and I became very self conscious to the point where I wouldn't socialise or let anyone take my photo. Since then I have seen a leading doctor and we have booked in for corrective surgery. After reading this post and all of the comments, I am actually really surprised of the amount of people who also have the syndrome and it's comforting to know that people are going through the same troubles. All my life I have come across negatives of having DS but I have also found positives including being unique and being able to do something that no one else can do. Funny how everyone calls it their 'party trick' -might have to use that phrase now!! :)


Abagail 22 months ago

I have it in both of my eyes, had surgery when i was 5 and 10 months old and twice when i was 4, and the thing is I`ve never bine made fun of for it. But the thing is i was diagnosed with it when i was about 2 months old so i only realized something was wronge with me when i was in second grade because i thought it was what everyone else dealt with. But now im 14 my eyes don`t move side to side and barley move up and down, so i have to move my head more than most people do. My eyes do drift and i have been asked why my eyes drift or if i have lazy eye but ots sort of difficult because i have been put in learning support groups because my school sees it as a learning disability and it really isnt. So i finaly got out of those but the only thing that i use is exstra time for every test i take.


Chelli Schmac 20 months ago

Thank you for the wonderful article. It was great to see someone explain this experience with this syndrome exactly as I have experienced it. I am 45 and have Duane's Syndrome as well and everything you said fits to a tee. I am unfortunately experiencing some vision issues at this point I think because I am so right eye dominant. So I am on a mission to find vision exercises that may help. And I have constant neck and back pain that is just getting worse over time. I wish there was a way to correct this permanently. The stress from having my head off-center is wreaking havoc on my body.


Marsha 14 months ago

I have DS type 1 in both eyes. I can't turn either eye outward. I was diagnosed in my early 20's...I am now 50. I too had to endure the "cross eyed" names all through childhood. The eye Doctor that parents took me to thought it was lazy eye, and treated it as such. With eye"exercise" and wearing an eye patch. These didn't help of course. I do have trouble with peripheral vision because of it. I've been told that there is nothing that can be done to correct it....


Yuri05 12 months ago

I had never heard about this condition before...very informative hub and thanks for sharing your experience!


Skydancer 11 months ago

Little late but I have DS and oh wow, I thought I was the only one. I just found this article by accident or maybe not. Either way, I have it in my left eye and while I have no double vision ahead or right, looking left you bet. I am in my 40's and well the doctors had no clue back in the day, they talked about muscles and fixing it. Its now mute because I have lived with it all my life. It does not effect me in my peripheral vision which is weird one eye doctor in my teens found that out. I still turn my head left when driving and long ago stopped the parlor tricks. My family thought I should cross one at command. It gave me severe headaches, and after my mother spanked me and told me I needed to listen and do it as I was told by her and other adults I got them in trouble. Told my doctor and teacher. They told her and my father if they wanted to have entertainment for family and friends get a clown but hit me over something like that they have me removed.


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Chesarai 5 months ago

Hey! I have no idea how old this is but I figured I might as well comment. I'm 13 years old, and I have Duane Syndrome. Mime is similar to yours, Type 1, but it affects my right eye instead of my left. I was really excited when I saw this because I had never seen or heard of anyone else who has Duane Syndrome. Also, I don't know if anyone has ever heard of this with this condition, but I also can't cry out if my right eye, which is my affected eye. Every time I cry, I only cry out of my left eye. But when my eyes water, not crying, only my right eye waters! My mom told me it had something to do with my tear duct being paralyzed or something, but I've done research and haven't been able to find anything about this going with Duane Syndrome.


MatthewG 10 days ago

I have DS when I was younger I went to doctors that would notice it but wouldn't know what it was on till a few years ago did they finally tell me what it was. I am glad to see more people like me. In the end I still consider myself a unicorn. But I do not know what I need to do to help me in my driving do i get my own mirrors or how did you do it?

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