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Living With Ichthyosis

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What Is Ichthyosis?

For those who don't know what Ichthyosis is, I will begin this article with a definition from FIRST (Foundation for Ichthyosis and Related Skin Types):

"Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The prefix "ichthy" is taken from the Greek root for the word fish. Each year, more than 16,000 babies are born with some form of ichthyosis. Ichthyosis affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime."

I myself was diagnosed when I was 6 years old, and as annoying as it is being compared to a snake, fish, or any other creepy amphibious being, that is the right term to describe it. That aside, Ichthyosis—even mild types like Ichthyosis Vulgaris—are hard to manage and control. I am going to tell you how I manage my Ichthyosis and hope that it helps others with the condition. I would like to make it known that this article is purely for informational purposes and should not be used in place of real medical advice. Talk to you doctor before making any changes to your treatments.

Source

Bathing Tips

While Bathing or Showering:

  • Make sure you soak and have plenty of time to bathe and get ready.
  • Try not to take overly hot baths and showers.
  • I have found Dove soap to be the best because it is gentler than other soaps and has moisturizers, so it won't dry out your skin (even more).
  • Use a rough, textured bathing glove (this can be found at dollar stores), and exfoliate your skin really well. Pay a lot of attention to your feet.
  • As much as I hate to touch dry yarn, a yarn washcloth in the bath works really well on more sensitive areas for exfoliation.

Ask your doctor about Selenium Sulfide, which you can only get by prescription. It's for your scalp and/or skin. It looks and smells a lot like liquid foundation, but it is amazing stuff. I use it for my scalp and have had amazing results.

After the Bath or Shower:

  • Don't rub you skin with the towel—just pat dry so you skin is still a little damp.
  • Immediately apply a lotion or cream from head to toe. (I prefer something with Urea in it or Lubriderm.)
  • For feet I prefer Petroleum jelly, and then I put on a pair of thick socks.
  • When it comes to perfumes or cologne, it is best to put it on your top layer of clothes so you don't irritate you skin.
  • If I take a bathe before bed (which I prefer because it takes so long), I have a adult-size pair of footie pajamas I love to put on after applying all of my lotions and creams. I don't care if the pajamas get ruined; it saves my bedding and it keeps all of my products on my skin! Another good alternative is wearing a pair of cotton leggings and a snug, long-sleeved shirt.

Other tips:

  • Try to stay out of cold weather as much as you possibly can.
  • For me, at least, being in the sun helps my skin a lot. (Don't forget sunscreen though!)
  • Buy lotions in bulk. Look for sales and try to find coupons because you're going to be spending a lot of money on lotion.
  • Keep a small bottle of lotion with you at all times for your face and arms. Keep bottles of lotion in your car, your purse or man-bag, etc., so that you always have it when you need it. The same is true for chapstick (I love Carmex!).
  • Humidifiers are great to have to put moisture in the air at home.
  • Water misters are nice to have around in the summer if you start to overheat.

A Great Video by FIRST

Trying Something New

I've been thinking about experimenting with my regime. All of the amazing tips my readers have given me, as well as other tips I've found online, make me want to step out of my normal routine and see if I can find something that works better. My plan is to make up a list of all the tips I don't currently use and try them out one at a time for 2 weeks each (I don't want to try more than one at a time because then I won't know which tip worked). I will compile my list, pick one, and post my results here for everyone to see. So, if you have any great tips, now is the time to comment and tell me. I can't wait to start! I want to thank my amazing and supportive readers for all of their questions, comments, and tips

Do You Have Tips to Share?

Do you think I forgot something, put up any wrong information, or do you have any questions? If so, please tell me! Leave a comment below, and I will answer your question, revise the article, or add anything I've forgotten.

In addition, I would love to hear what works for you. Not only would I love to try it out myself, I can add it to my tips and maybe your suggestions could help others, as well. There isn't nearly enough information out there on Ichthyosis, and hopefully we can work together change that!

Did I miss anything? Is there anything confusing? Do I need to add Anything?

  • Yes, you missed information
  • Yes, this was confusing
  • Yes, you need to add some more things to this article
  • No, the article had everything I needed
  • I don't know
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Comments 30 comments

polymathlv profile image

polymathlv 5 years ago from USA

I had never heard of Ichthyosis before I read your hub -- this is valuable information! I too suffer from skin problems, so I sympathize with your condition.


Minnetonka Twin profile image

Minnetonka Twin 5 years ago from Minnesota

Your hub will help many out there with similar skin problems. Great information and easy to read. Thanks:)


Misty May profile image

Misty May 5 years ago Author

Thank you so much I really hope this helps people out!


saadjaved 5 years ago

thanks for give information and providing the facility


LillyGrillzit profile image

LillyGrillzit 5 years ago from The River Valley, Arkansas

Misty May, this is well written, and going to be very helpful to others. Welcome to HubPages. Write on! Check out the HubMob, Hubber University, HubNuggets, and the 30 in 30 challenges. I didn't understand how to do it officially, but I challenged myself, and met another newbie doing the same thing. We are good friends on HP now :0). Looking at my statistics, it was overall my highest rate of growth. It is not easy, but oh how satisfying! The very best to you! Good writer.


Misty May profile image

Misty May 5 years ago Author

Thank you so much lillygrillzit I'll have to check those things out. I've heard a little bit about 30 in 30 days and am thinking about trying it out!


emily 5 years ago

I to have Ichthyosis, my doctor told me to use dove unscented body wash and she gave me a prescription lotion to put on after I bathe. During the summer you usually cant even tell I have it and some days in the winter are worse than others.


Misty May profile image

Misty May 5 years ago Author

@emily I know what mean about summer and winter, I love summer and other than my legs you can't tell I have it at all either. I've noticed in the winter when it hits freezing is when my skin gets the worse. It hurts expecally on my hips when its really cold. I'm so excited summer is almost here, some days I think about moving somewhere like texas so its warm most of the year! Thanks for your comment it's always nice to hear from someone else who has ichthyosis, a lot of people don't understand how painful and annoying it can be, especially with how much we try to cover it up and pretend its not there. And the fact of putting lotion on what feels like every 5 minutes! lol I hope your as excited about summer as I am and thanks again for the comment.


babbling-brookie 5 years ago

What type of ichthyosis do you have? I had never heard of it until my son was born with it 3 years ago. He has CIE ichthyosis. His scalp is one of our biggest trouble areas. Does the selenium sulfate sting at all? I know we have trouble using the lotions with urea in them because our son is still young and doesn't tolerate the stinging that it causes. For now, we use Vaseline, intensive repair, which is the best kind we've tried so far. Sounds like your dealing with it pretty good. Thanks for the hub!


Misty May profile image

Misty May 5 years ago Author

@Babbling-Brookie... I have Ichthyosis Vulgaris and my scalp bothers me a lot too sometimes. The selenium sulfate doesn't burn and you just use it once a week or what you doctor thinks is right for your son. I know what you mean by some lotions stinging. And Vaseline is amazing. I've also found that baby oil gel works wonders when you put it on right before bed(and its cheap too you can find it at the dollar store). Try putting some on him and bundling him up in some thick PJs if you can at night its gentle also. As for the scalp another thing that worked with me, that my mom did when I was younger, was put olive oil in my hair and rubbed it into my scalp, then put a shower cap on for awhile while I watched cartoons, then washed it out. (mayonase works great also, almost better, but I couldn't and still can't stand the smell lol). Tea tree oil shampoos are great too but they're pretty spendy sometimes. I hope these help! And I'm glad you switched lotions when you realized it stung, when I was little the lotion they gave me really stung also, some types still do. It's really painful and can irritate the skin even more, which doesn't help at all. I know lubriderm doesn't sting also and you can find it pretty cheap too when you need something that's not greasy or messy. Thanks for reading and if you have anymore questions just ask and I'll tell you everything I know!


mommyof4 5 years ago

hello my son has had a severe case of Ichthyosis since he was 2 days old. he is now 7 i am trying to find something for the scales on his head so his hair will grow (he has baby fine hair cause the scales block the hair from coming up) in the summer i shave his head with buzzers and it takes a couple layers off at a time but he is getting to the age where he dont want his head shaved he wants to style his hair like daddy any help would be great


Misty May profile image

Misty May 5 years ago Author

@Mommyof4 When he gets back from school everyday try to masage olive oil into his scalp and let it sit and soak in for awhile and before you give him a bath use a comb (a lot metal combs for this, though he might not like it too much) and loosen up the dry skin on his scalp the best you can (it could take a little while) then wash it out. Tea tree oil shampoo and conditioner is great though sometimes a little spendy. And when I was little my mom used 'Tresemme Moisture Restore Instant Self-Warming Hot Oil Treatment'(big name) once a week and it worked really well with me, and it also feels really nice because it warms up when it touches your wet hair :)Selenium sulfate might help him too but that's something to talk to his doctor about because its only available by perscription. I hope one of these things works for you!


babbling-brookie 5 years ago

Thanks for the advice! I will definitely give these ideas a try!


Yep, that's me 5 years ago

My husband has ichthyosis and he showers using baby shampoo which is very mild. After showering, he applies Curel lotion to his entire body.

Both of these products work very, very well and he has been living with this skin condition for 50 years.

I hope this helps someone who has the same issue.


Me, too 5 years ago

My family has ichthyosis and I strongly advise those dealing with it to look into FIRST, www.firstskinfoundation.org. Every other year in June they hold a huge family conference for a whole weekend and offer free doctor appointments, information seminars, social time where you can talk to other moms, and a dinner/dance. The next one is June 22nd, 2012. They also hold smaller regional conferences that just last half a Saturday in 4 different cities each year.

Another good place to go for information is www.ichthyosis.com. There is a bulletin board there with loads of good information and people willing to answer questions.

A third good place to look is on facebook. There are several Ichthyosis groups that are very active.


Andrea 4 years ago

Thank you for being brave and talking about this. FIRST is a great organization and support system. I have Ichthyosis too along with psoriases. I recently got a clarisonic skin brush. Its expensive (about 225 for the model with the body brush). It has improved the texture of my skin. Its not an exfoliating brush. It is a deep cleaning brush. Its making the skin cough in the pores and hair shafts of my skin come to the surface where it can be removed. My dermatologist suggested I use it because it also helps products penetrate deeper into the skin by cleaning out the pores and follicles.

I am currently battling with my scalp. My hair is falling out in chunks because I also have the added complication of psoriases. I am trying an overnight olive oil treatment tonight. I hope this helps clear it up.


Misty May profile image

Misty May 4 years ago Author

I'm glad the brush is working for your skin, I'll have to look into that, and I'm really sorry about your scalp and hair. I hope the olive oil helps, stay strong :)


Misty May profile image

Misty May 4 years ago Author

I'm thinking of adding more hubs dealing with the different specifics, such as scalp care and different products. I'll try too get them up as soon as possible.


mandy 4 years ago

i have a very troublesome scalp..it keeps on itchin,,,and no dandruff shampoo ever works ,,,,i was diagonized as icthyosis vulgaris,,,,,,i dont use oil on my hair because the dandruff gets worse,,,can anybody come up with some advice


Misty May profile image

Misty May 4 years ago Author

Hey Mandy. For your scalp I really recommend talking to your doctor about Selenium sulfate especially to help with the itching. Another thing that works for me when I don't want to go through the whole oil process is first brushing my hair till the tangles are out, then combing through it starting at the scalp to loosen the dandruff. I do this for awhile until I can tell I've got a lot of the dandruff out and my hair is pretty oily and also covered in dandruff. I only do this before I take a bath and then let my hair and scalp soak for awhile before vigorously shampooing (sometimes twice). Then at that point when I use conditioner (which I have too cause my hair is so long, thick, and curly) I make sure I don't get any of the conditioner on my scalp (I try to keep it away from the top of my head in general), because it can build up and make dandruff even worse. I hope this helps :)


PattyAnn 3 years ago

I am 70 yrs. old-living with icthiosis since i was 3 yrs. old. I find eucerine skin products work best for me. Eucerine Body Wash is great.Hard to find Target or Walgreens. Baby oil for scalp when needed.And vaseline is the best at night. Sometimes i thought i was alone,never saw or talked to anyone else with this. So greatful i came back to this site.Thank You So Much.


Misty May profile image

Misty May 3 years ago Author

To PattyAnn, Thank you so much for your comment! I know how alone it can make you feel, when it seems like your the only one that's struggling against their own skin. It is really nice to be able to find others who know how we feel and I'm glad you found this :) Thank you for the tips also, I really appreciate hearing how others handle their skin. I'll have to try the body wash you mentioned. Once again thank you for commenting and I'm glad I could help you feel a little less lonely in this world of ours :)


V. J. Skitch 1/11/2013 3 years ago

. Currently I am using Alpha Keri Oil, also their Rich in Cream,also

their Lotion. Like so many others, my problem is so much worse during

te winter months, so living in Australia I am happy to be only a few weeks off summer which begins in December.

Over the years, I have used countless different emolliave enjoyed reading the above, with varying results


Misty May profile image

Misty May 3 years ago Author

Thank you V.J. I've never heard of Alph Keri Oil before! Lol I wish summer was on its way here but winter is just starting where I am :P it's that time of year for me to lotion up and bundle up! I hope you have a wonderful summer on your side of the world though!


Mauro 2 years ago

Hello, I have Vulgar Ichthyosis and I use a cream based on salicylic acid (3%), starch, water and glycerin every day after the shower and no one notices I have something different in my skin. Even doctors get surprised when I say I have this. If I don't apply the cream, my skin begins to itch and scales are visible. Try to ask your doctor about this formula. Sorry for my awful grammar.


KodaLove 13 months ago

I have Icthyosis myself, I've had it my whole life but was "officially" diagnosed last year. I was wondering if anyone has any recommendations on what makeup brands are good to use on my dry face. I use Cetaphil to wash and lotion my face since it is so gentle but what are some gentle makeup brands?


Misty May profile image

Misty May 11 months ago Author

I'll have too look into that Mauro :) that sounds amazing! Kodalove I'm still trying to find makeup that works well, I can find gentle stuff but nothing that doesn't make my skin on my face dry out and flake, I'm sorry, I'll keep trying and let you know if I find anything :)


Jose 10 months ago

Your article is very good, and think your suggestions work for anybody with this problem and can help them a lot. I think it's also importanto to talk about stress: my icthytiosis is worse when i'm in exams or under a stressful situation, in fact right now I have finals and im shedding skin from places I never had before. I'm 20. Thanks!!


Misty May profile image

Misty May 9 months ago Author

Thank you! I'm 25 myself, I have never thought about stress making ichthyosis worse, I guess I've never noticed the correlation of the two, I'll definitely pay more attention to that now, I'm glad you enjoyed the article and I'll do some research on stress and ichthyosis. :)


James 9 months ago

Male 37

Had icthyosis all of my life, and I'm not pushing any pharmacudicals but Tazorac.1% was an elephant gun for my skin. I even began to sweat where I never had before. It also most definitely reduced fine lines on my face too.

But my company changed insurance and now they won't cover it, because it is very pricey. Just thought I'd through this out there for those with good prescript coverage.

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