Meet Kole S. – IN

I remember back in 2012 when this little baby was born with a collodion membrane (his was a thick blister-like membrane). The staff at the hospital gave us Aquaphor and said to see the pediatrician. The pediatrician recommended Cetaphil Cream at every diaper change and kept an eye on it. After a few months of still having flaky skin constantly, he sent us to the dermatologist for a consult. We saw a nurse practitioner at the dermatologist and she called in the doctor to confirm her suspicions. The doctor didn’t have much bedside manner, he just said “yep, that’s what it is. No long baths, swimming, or anything to do with spending long amounts of time in the water for his whole life and use CeraVe creme”. I was devastated; we are WATER PEOPLE!! I had never heard of ichthyosis, so of course the first thing I did was hit the Internet and found FIRST! Those message boards were so, so, so helpful!

We always treated him like any other child and never made a big deal about it. No big introductions at school, no special accommodations other than a cooling vest for recess when he was little (he did have a 504 plan for his cooling vest, access to water, and an air-conditioned school bus but it was never a big deal). Whenever people in public or kids at school asked about it, we and he would just reply “I was born this way” and moved on. We never said we weren’t doing something due to it. I just plan things in seasons where he can do the same thing everyone else is doing. We go to the pool in the summer, the beach in the fall (I still want to go back and tell that dermatologist how GREAT he does in the water!) and places like Gatlinburg in the Spring. We make it work!

He stopped the cooling vest in middle school when I was comfortable that he could recognize himself overheating. I told him I could get him out of gym class, but he said “no!” He wanted to do gym class like everyone else and assured me he’d be fine, and he WAS. He still rides an air-conditioned bus otherwise he has no accommodation.

We always kept skin care simple too. We tried several recommendations that I came across in ichthyosis support groups when he was little, but we always went back to the basics. It was always what worked best for him! It was important to me to make sure he never hated himself or his skin due to the maintenance or “it being made a big deal”.

When he was little, his skin care routine consisted of one bath per week using a pumice stone or mitt to gently remove the skin, baby oil on the scalp weekly while bathing then combing out the flakes the next day and using Cetaphil cream daily. I added socks to his feet and glycerin to the cream in the winter. As he got older it went to showers instead of baths, but still one weekly. Now that he’s a stinky teenager it’s 2-3 times a week.

Today he’s a teenager going into his first year of high school with lots of friends just like all the other kids. He takes care of his own skin now (and has quite hairy legs) and sweats just enough to need deodorant, so he doesn’t smell like a gross boy. He chooses to only lotion after the shower now, so his skin isn’t as good looking at it once was. He’s old enough to make that decision for himself (started that in middle school). When I told him I was asked to write this, he nonchalantly said “Why? I’m just a kid in high school with a skin condition”. It doesn’t even phase him. He is who he is and he’s okay with that. I told him one day maybe he could write one of these from his perspective. I hope this story can share hope with others! They grow up so fast!