Impact of Atopic Dermatitis on QoL
Taylor and Tina Capps assess the burden of atopic dermatitis on Taylor’s life and the impact on her family.
Raj J. Chovatiya, MD, PhD: It sounds as if there’s so much that contributed to this burden in your life. You talked about some of the treatments, trying to go to physicians and health care providers for answers. You even talked about some of your personal activities, like gymnastics. Maybe you can tell us, Taylor, some of the ways you feel that living with atopic dermatitis has had a big quality-of-life burden for you. How has it impacted you in negative ways, or not allowed you to seek the quality that you were looking for before you got things under control?
Taylor Capps: If I look back over my childhood, I constantly had this bad rash around my lips that I think was from the peanuts. In the fifth grade, a girl told me I looked like a clown. That has stuck with me ever since. Going back to gymnastics, it burned badly when sweat got into some of these wounds because I’d scratched them in the night and break them open. Things like that. I couldn’t control that. That impacted me. It’s something you had to figure out. It was embarrassing to have these rashes all over you and not be able to figure out what was causing them.
When I went to the beach, I hated getting in the saltwater and putting on the sunscreen because it burned so badly. For a lot of little kids, they run around and don’t even think about it. As soon as I got out of the ocean water or out of a swimming pool, I immediately needed to rinse off with a shower. Even if I got in the lake, we’d bring gallons of water to dump over me because if I didn’t immediately clear my skin of anything that might have been in the water, I’d have these giant reactions. I can’t imagine getting out of the shower and not having to put on lotion and lather my body. Even going to a friend’s house for a sleepover, I’m lugging all that. I’m always nervous about sleeping in sheets or using towels that aren’t dye-free because those things certainly give me a reaction. Those are some of the main things. But it’s something I’ve become accustomed to. It’s not as burdensome now, but it certainly wasn’t fun as a kid.
Raj J. Chovatiya, MD, PhD: That’s very powerful. Thank you for sharing that. The burden of our patients who deal with atopic dermatitis is huge. We also know that there’s a big burden placed on families and caregivers. Tina, is there anything you’d like to share in terms of the effects that atopic dermatitis had on the family unit? Were all of you trying to help Taylor control what was going on?
Tina Capps: She did a good job. As a parent, you want the best for your child, but I was watching her suffer through this. As she was sharing, there were name callings, and her confidence in being able to step out with clear skin and not be concerned about what someone was going to say about the lip line. You hurt because she hurt. When she was uncomfortable and did not have those rashes on her body, we wanted to embrace her, get it cleared up, and to make her life better.
Raj J. Chovatiya, MD, PhD: Thank you for sharing.
Transcript Edited for Clarity
