The perspective children have about their situations astounds me. There’s a factual explanation, plus a sense of the bigger picture as well as hope for improvement in their lifetime. Today Ethan, aged seven, writes his story. Some of the things Ethan writes about reminds me of how I felt at his age. His Mum, Erin, and I are Facebook friends. The family lives in North Carolina, USA. Erin tells me that Ethan’s sister Emma (pictured below) wishes she could also have Ichthyosis so she can be like her big brother! Erin tells me they think Ethan has Congenital Ichthyosis form Erythroderma (CIE), but there’s been no genetic diagnosis yet. Thanks for writing, Ethan! You did a great job!

“One of the things that is bad about having ichthyosis is using aquaphor on my face. This is because it is greasy and I don’t like it on my face. Eucerin is not as bad. I like it better. My favorite lotion is the coconut lotion Daddy got for me.

At first I don’t want to get in the tub, but after I don’t want to get out. The water feels good and it makes my skin feel great. When Mommy exfoliates my skin I feel a little bit lighter. I like the way that feels. When I get out of the tub, I will put on my lotions. The best person for doing my lotions is Mommy. She makes my skin feel terrific!

When Mommy isn’t around and people ask questions about my skin, I just tell them I have a skin condition. That’s all I say. It makes me feel bad when people ask, “Why is my skin red” or “do you have a sunburn.” I just tell them no. Some people have asked, “what’s wrong with your skin?” I don’t like it when they do that. My class doesn’t really ask me questions anymore. That makes me feel good inside. I wish more people would stop asking me about my skin. If more people knew about ichthyosis, I wouldn’t have to answer as many questions over and over. I sometimes forget about my skin being different.

I am really itchy even on my hair—everywhere! It kind of makes it hard to stop peeling off skin. Sometimes it bothers me when I’m doing work. When I sleep, I don’t really itch at all. Sometimes it’s hard to get to sleep when I itch and I have to take some medicine for that.

I also wear a special bracelet because I can’t use bandaids. They tear my skin. If I get hurt, I use something similar to a bandaid. It doesn’t stick to my skin though.

When I get hot, my cheeks get red. I can’t sweat. Some water can cool me down or mist. I wear a cooling vest. It is really heavy. I wish I didn’t have to wear it because it kind of makes it hard to play. It slows me down. I’m glad I have one though so I don’t get hot. I like to be able to play like other kids. I wish I could sweat. I wish I wouldn’t have to wear anything to keep my cool. I wish I could sweat. I still get to do lots of fun things. My parents try to find fun opportunities. I even went to a fun Science Camp last summer. I can still go to Boy Scouts. I still help with the chickens and goats on our farm. I still pick things in the garden.

I wish someone could invent something that would keep me cool automatically that could keep an eye on my cheeks for when they were getting too red. I want to be able to go outside for longer before I get too hot.

I am kind of happy I have ichthyosis. I’m looking forward to going to skin week at Victory Junction Gang Camp when I get a little older. I have made a lot of good friends. But, there are parts I don’t like. I don’t like getting too hot, or itchy. I sometimes worry what people think about me. I think other people notice my skin. I wish there were a cure because then I wouldn’t have to worry about myself. I don’t worry about myself much, but there are still things I would like to be able to do.”

 

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.