Living With Ichthyosis and How I Managed It
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 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.
Tips for Bathing and Showering With Ichthyosis
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 applying a layer of petroleum jelly and then putting 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.
- 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!