Written by Karen Chen, as told by Stephanie Watson
I’ve had atopic dermatitis for as long as possible. When I was young, I remember getting a lot of rashes in the areas where my knuckles were – the insides of my elbows and knees. I was itchy all the time.
The pediatrician and other doctors I visited at the time said it was normal for children to develop eczema. They eventually told me I would get out of it.
I was so itchy that I had trouble sleeping. I used to wear long-sleeved shirts as I slept so as not to scratch my skin during the night.
My whole life has revolved around meeting my eczema needs. I was checking the weather every day. If it was too dry or windy, I wouldn’t go outside. Just hitting my hair against my face in the wind will irritate my skin.
I mainly used to wear dark clothes. My skin was bleeding because I always had open wounds from scratching, and I was afraid to stain my white clothes.
I was so self-conscious that I went to great lengths to hide my skin. I wore long sleeves even in summer. Sometimes I don’t leave my house when my eczema is looking particularly bad.
I felt excluded from normal childhood activities. Many of them would aggravate my skin. For example, I couldn’t swim because it would dry out my skin and cause eczema. And if I sweat while exercising, I’ll get itchy hives. When my friends wanted to go out for something after school, I was so freaked out that I couldn’t join them.
I did not get rid of the eczema as my doctors expected. Instead, it started getting worse in high school. I was so itchy I couldn’t focus in class and couldn’t sleep at night. I started to fall back more and more. Because I didn’t want to tell my professors that eczema was to blame, I came across as a student who didn’t try hard.
I hope people understand how chronic diseases affect people. Whenever I had to miss class in high school, I would tell my teachers and friends that I was out because I was sick. For most other people, the illness occurs for a limited time — as long as it takes to overcome a cold or other infection. There was an expectation that within a week I would be fully recovered and back in school. But since my condition was/chronic, whenever I would “get sick” with a bad flare-up, I would have been bedridden with no recovery timeline. It might be days, but probably weeks and months, before I stop the flare-up and can go out again. And when I came back, I felt a little less terrible and was still able to function.
Few people realize that eczema is a disability. Those around me were constantly underestimating my experience, and the impact the disease had on my daily life. If I hide my condition, people don’t take me seriously, and if I’m honest about it, they don’t want to be near me. It was a lost situation.
Eczema affected me so much that it took me an extra year to graduate from high school. I felt like the world was going on without me.
I’ve tried almost every medication, and some alternative treatments for managing atopic dermatitis. I went to pediatricians, dermatologists, and allergists for advice. I rubbed off topical steroid creams of varying potency, and got steroid injections. I’ve tried light therapy, which is basically a tanning booth that blows UV rays on you. I used antihistamines and various lotions to try to tame the itch. Nothing helped.
I took strong pills that suppress my immune system. I remember the warnings on the bottles, which said these medicines are for people who have just had an organ transplant. That was very scary. I just wanted my skin to stop showing.
I’ve also tried a lot of skincare trends over the years, like drinking 10 glasses of water a day or rubbing coconut oil on my skin. None of them worked. Nor the herbal remedies recommended by my family.
My doctor checked me for allergies, pricked my skin to see if it had spread to hives. During one of the tests, my doctor put patches of a common allergen on my back. The strip irritated my skin so much that it itch for the three days that I took the test.
She participated in a clinical trial of a biologic drug used to treat psoriasis. I stayed in that study for an entire year, but the medication didn’t help me.
When I was 16, my doctors stopped telling me that my eczema would get better with age. At that point they realized it wasn’t going to go away.
I was always looking for new treatments. One day, I saw a story about dupilumab (Dupixent) in the news, and it sounded very promising. I reached out to my doctor, Emma Guttman-Yasky, MD, at Mount Sinai in New York. I had moved to California by then, because I was hoping the warm climate would help clear my skin. I told Dr. Guttmann-Yasky that I really wanted to get this new drug, and she helped speed up the process with my insurance company.
It’s a very expensive drug, so a lot of insurance companies want you to “prove” you need it. They ask for a comprehensive list of everything you’ve tried, as well as proof that nothing on the market has worked for you. I had to go through an extensive rejection and appeals process before I finally qualified for the Patient Assistance Program.
Once I got the medication, it took a while for it to take effect. It was very gradual. But at some point, I realized that if I had a dandruff, it would be gone in 3 months instead of the 3 or 4 years it took to clear the scab. And when I was applying steroid creams, they really worked for the first time.
It took me from 6 months to a year to experience the full effects of the drug, but today I am seeing a huge difference. When I was growing up, eczema was all over my body. Now I only have a few corrections here and there. It is very easy to manage. Most of the time, I don’t even notice it’s there.
Unfortunately, there is no cure for atopic dermatitis. I still have breakouts, and I have to be careful about staying outside for too long because the wind can dry out my skin. But compared to what I had before, it’s really manageable.
I feel better than I have ever felt in my entire life. A year before I started dupilumab, I was failing high school. I am now studying mechanical engineering at the University of California, Berkeley. It was night and day for me.