What I learned at Expo Camp

My name is Kyle. I am 16 years old from Sarnia, Ontario, Canada, and I have battled with eczema my whole life. I was lucky to be able to go to the Eczema Expo in Chicago in June 2018. I went with my mom and brother so we could learn more about living with eczema.

I was in the Expo Camp, where I got to be around other kids who not only had eczema but also allergies, asthma, anxiety and even more health issues. It was the first time in my life I felt like I was with people who understood me, who saw me—not just my skin or allergies.

When I was a baby, I had eczema on my face, arms, legs and body. I went to the doctor and hospital every few days due to infections and pain. My clothes were all cotton, my baths and creams were scheduled four times a day, and my diet was allergen-free.

Like many others with eczema, I was allergic to many things, including nuts. I had bad asthma that flared along with my skin. My parents always made sure everything was done that was needed. I was surrounded by family and friends who understood my health issues and accepted me as I was.

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Now that I’m a teenager, it has been an even bigger struggle to keep my skin under control and to try and lead a regular life. Sleeping for teenagers is hard enough as it is. But trying to sleep with eczema is horrible due to the constant itch and pain.

Many nights, I end up taking multiple hot baths or showers to try and numb the pain so I can fall asleep for a bit. It’s hard to find all-cotton clothes because anything else makes my skin flare. Trying to bathe and put my creams on by myself is not easy either.

By the way, “The Itch” is real!!! My mom bought me a back scratcher to help, but I used it too much and ended up bleeding because I scratched so much. My doctor gave me a new prescription that was made for itching, which was great, but it made my asthma worse and I couldn’t breathe.

It is hard to be around people that don’t understand what eczema is because they stare at me and worry that I am contagious. I have not been at school for six months now. I was exhausted every day because I couldn’t sleep.

I was itching constantly, frustrated that nothing was helping and tired of people staring or making comments. A so-called friend took a picture of me and shared it with a mean comment about my skin being contagious, and it was probably the worst thing anyone could have done.

Sometimes people try to be helpful and offer advice on things that may work to help my eczema. It is nice that they care, but they don’t really get it. I’ve tried coconut oil, tanning beds, not bathing and changing my diet. None of these worked, but thanks. Wrapping myself in a blanket like a burrito helps for a bit. Playing video games can keep my mind occupied.

Sometimes I feel like life is always going to be this hard. I feel so alone and that nobody understands. My doctors don’t have any answers and keep hoping I will grow out of it. I feel angry and frustrated that I can’t control any of it.

That’s why attending Eczema Expo 2018 meant so much to me. Meeting other people that have gone through this before or are going through it gives me hope that things will get better.

https://nationaleczema.org/expo-2018-recap/