Meeting Other Kids with Eczema Changed Her Son’s Outlook on Life

Eczema can leave you feeling isolated and alone. And this can be especially true for kids with eczema. Lindsay Taylor, from Adel, Iowa, watched her oldest son, Camber, 9, struggle with eczema for years and saw the way it negatively affected his mental health. Below she shares a little of Camber’s eczema journey and how she saw him transform from shy and short-tempered into a confident, optimistic kid after he met other young people with eczema.

NEA: When was your child, Camber, diagnosed with eczema?

Lindsay Taylor: Camber was 1 1/2 years old when he was diagnosed with atopic dermatitis. It started with a little spot on his face and his knees — kind of no big deal. His pediatrician gave him topical steroids to start, but it kept getting worse.

We received all sorts of diagnoses, everything from chicken pox to hand-foot-and-mouth disease. By the time he was 3 years old, he could not sleep alone. He would itch at naptime and in the night so badly that he would bleed.

NEA: What hurdles did you encounter in the beginning of Camber’s diagnosis? 

LT: At the beginning it was mainly just physical. What doctor can I see that can give me an answer? What do I put on his rash? How do I get him to sleep? How do we keep him comfortable at night? It was a lot of figuring out what was causing it. At one point, we thought he was allergic to the dog, so we got rid of our dog. We were willing to do anything to help him.

The doctors we were seeing were not helping us. We spent a lot of time in that stage. I didn’t know what health professionals I could trust or how to move forward to help my son. That’s how I felt for a long time.

And then it became the mental aspect of it: how are we going to manage this for our family?

NEA: What are some of the ways that eczema affected Camber?

LT: When he was young it was just something that hurt him, and mommy had to put lotion on him. As he got older, it started to affect his behavior.

Camber was a good kid. He was a rule-follower by nature. He was shy and quiet at school and his teachers loved him. But his eczema made doing certain things hard.

We described Camber as our “glass half-empty kid.” He could be upset at Disney World. His perspective was everything sucks. He did not enjoy things. He was short-tempered. We could see glimpses of him, but eczema really affected who he was.

When he was 7 years old, he went through topical steroid withdrawal (TSW) and his eczema became something that made him feel so different from others. He would say, “I don’t belong in this family. You’re normal and I’m not.”

That year was tough. We reassured him that we loved him and would always love him no matter what. As a 7-year-old, he didn’t have the perspective to see the other side of TSW. He just knew he didn’t want to live like that.

During TSW, he didn’t really play outside because the wind and weather would hurt his skin. He just felt like he couldn’t even be a kid. During a flare, he was often bed and couch bound. He would go to school if he was not going through a flare, but he was not going to recess or gym class.

Camber felt so alone during the worst of it. He didn’t think there was another person like him. I tried showing him stories of others in Facebook groups, but it didn’t matter. 

NEA: How has Camber’s relationship with eczema evolved over the years?

LT: Things changed after we went to Eczema Expo 2022 in Seattle. One of Camber’s doctors, Dr. Olivia Hsu Friedman, told us about it, and we applied for a scholarship to attend Expo. We were camping when we found out we got a scholarship. Camber literally danced in the rain because he was so happy. He said, “I get to meet other kids like me!” His perspective changed before we even got to Expo. He was more optimistic about things.

At Expo, Camber met Matt, a 17-year-old who had sort of been in Camber’s shoes at that age. He felt like he had people who understood his pain and struggles.

When we got home, he talked a lot about being a “Matt” someday for other kids at Expo Camp. He started saying things like: “I’m going to be able to help kids with eczema.”

Now we talk about life before and after Expo. Camber was a totally different person after Expo. It was life-changing for all of us. It’s hard to think back about some of these things. It’s funny now to think we ever described Camber as a glass half-empty kid. He has such a different perspective now.

NEA: How has Camber changed after meeting other people with eczema?

LT: His confidence has grown exponentially! Last year, his counselor asked him if he wanted to talk to the class about his eczema and he was against it. He is kind of a shy kid. This year, he went to a new school, and he decided to talk to his class about his eczema. He told them that he’s not contagious and answered his classmates’ questions about it. It was super empowering for him to talk to his classmates. He’s gained so much confidence in the last year.

He also has such a mature outlook on life now. He wants to go into a career where he can help others with eczema.