By Karen Chen, as told to Stephanie Watson
I’ve had atopic dermatitis for as long as I can remember. When I was little, I remember getting a lot of rashes in the areas where my joints are — the insides of my elbows and knees. I was itchy all the time.
My pediatrician and the other doctors I visited at the time said it was normal for children to have eczema. They told me I’d eventually grow out of it.
I was so itchy that I had trouble falling asleep. I wore long-sleeved shirts to bed so that I wouldn’t scratch at my skin during the night.
My whole life revolved around catering to my eczema. I’d check the weather every day. If it was very dry or windy, I wouldn’t go outside. Just my hair hitting my face in the wind would irritate my skin.
I used to wear mainly dark clothes. My skin would bleed because I always had open wounds from scratching, and I was afraid of staining my white clothes.
I was so self-conscious that I went to great lengths to hide my skin. I wore long sleeves, even in the summer. Sometimes I wouldn’t leave my house when my eczema looked particularly bad.
I felt excluded from normal childhood activities. Many of them would exacerbate my skin. For example, I couldn’t swim because it would dry out my skin and make my eczema flare up. And if I got too sweaty while exercising, I would break out in itchy hives. When my friends wanted to go out for something to eat after school, I felt too terrible to join them.
I didn’t grow out of my eczema as my doctors had predicted. Instead, it started to get worse in high school. I was so itchy that I couldn’t focus in class and I couldn’t sleep at night. I started falling further and further behind. Because I didn’t want to tell my teachers that eczema was to blame, I came across as a student who didn’t try very hard.
I wish people understood how chronic illnesses 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, being sick happens for a finite period of time — as long as it takes to get over a cold or other infection. There was an expectation that I would fully recover within a week and be back at school. But because my condition was/is chronic, whenever I would become “sick” with a bad flare-up, I’d remain bedridden without any timeline for recovery. It could be days, but more likely weeks and months, before I stopped flaring up and could go outside again. And when I did return, I felt only slightly less terrible and was still barely able to function.
Few people realize that eczema is a disability. Those around me were constantly minimizing my experience, and the effect the disease was having on my day-to-day life. If I hid my condition people didn’t take me seriously, and if I was honest about it, they didn’t want to be near me. It was a lose-lose situation.
Eczema affected me so much that it took me an extra year to graduate from high school. It felt like the world was moving on without me.
I have tried just about every medication, and a few alternative therapies, to manage my atopic dermatitis. I went to pediatricians, dermatologists, and allergists for advice. I rubbed on topical steroid creams of various potencies, and got steroid injections. I tried phototherapy, which is essentially a tanning booth that blasts UV rays at you. I used antihistamines and various lotions to try to tame the itch. Nothing helped.
I went on strong pills that suppressed my immune system. I remember the warnings on the bottles, which said these medicines were for people who had just gotten an organ transplant. That was pretty scary. I just wanted my skin to stop breaking out.
I also tried a lot of fad skin care trends over the years, like drinking 10 cups of water a day or rubbing coconut oil on my skin. None of them worked. Neither did the herbal remedies my family recommended.
My doctor tested me for allergies, pricking my skin to see if it broke out in hives. During one test, my doctor put patches of common allergens on my back. The tape irritated my skin so much that it itched for the entire 3 days that it took to do the test.
I took part in a clinical trial of a biologic drug used to treat psoriasis. I stayed in that study for a whole year, but the drug didn’t help me.
By the time I was 16, my doctors stopped telling me that my eczema would improve with age. At that point they realized it wasn’t going away.
I was always looking for new treatments. One day, I saw a story about dupilumab (Dupixent) in the news, and it looked very promising. I reached out to my doctor, Emma Guttman-Yassky, MD, at Mount Sinai in New York. I had moved to California by then, because I was hoping the warm climate might help clear my skin. I told Dr. Guttman-Yassky that I really wanted to get on this new drug, and she helped to expedite the process with my insurance company.
It’s a very expensive drug, so a lot of insurance companies want you to “prove” that you need it. They ask for an exhaustive list of everything you’ve tried, along with proof that nothing on the market has worked for you. I had to go through an extensive rejection and appeal process before I finally qualified for a patient assistance program.
Once I got on the medicine, it took a while for it to take effect. It was very gradual. But at some point, I realized that if I had a scab, it would go away in 3 months instead of the 3 or 4 years it used to take to clear up. And when I would apply steroid creams, for the first time they actually worked.
It took 6 months to a year for me to experience the full effects of the drug, but today I see a huge difference. When I was growing up, eczema was all over my body. Now I have only a few patches here and there. It’s very manageable. Most of the time I don’t even notice it’s there.
Unfortunately, there’s no cure for atopic dermatitis. I still get flare-ups, and I have to be careful about being 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’ve felt in my entire life. The year before I started dupilumab, I was failing high school. Now I’m studying mechanical engineering at the University of California, Berkeley. It’s been night and day for me.
Photo Credit: danielle71 / Getty Images
Karen Chen, Berkeley, CA.