By Karen Chen as told to Stephanie Watson
I have had atopic dermatitis for as long as I can remember. When I was little I remember getting lots 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 was seeing at the time said it was normal for children to have eczema. They told me I would eventually outgrow it.
I was so itchy that I had trouble falling asleep. I wore long-sleeved shirts to bed so I wouldn’t scratch my skin at night.
My whole life has revolved around treating my eczema. I would check the weather every day. If it was very dry or windy I wouldn’t go outside. Only my hair flapping in the wind in my face would irritate my skin.
I used to wear mostly dark clothes. My skin bled because I always had open sores from scratching, and I was afraid of staining my white clothes.
I was so confident 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 aggravate my skin. For example, I couldn’t swim because it dried out my skin and flared up my eczema. And if I sweated too much while exercising, I would get itchy hives. When my friends wanted to go out to eat after school, I felt too awful to join them.
I didn’t grow out of my eczema like my doctors predicted. Instead, things got progressively worse in high school. I was so itchy that I couldn’t concentrate in class and couldn’t sleep at night. I started falling further and further behind. Because I didn’t want to tell my teachers that the eczema was to blame, I seemed like a student who wasn’t trying very hard.
I wish people understood how chronic diseases affect people. Whenever I missed class in high school, I would tell my teachers and friends that I was missing because I was sick. For most other people, illness lasts only for a limited time—until the cold or other infection is overcome. There was an expectation that I would make a full recovery and go back to school within a week. But because my condition was/is chronic, whenever I got “sick” with a bad flare-up, I was left bedridden with no timeline for recovery. It could be days, but more likely weeks and months, before I stopped flaring up and was able to go outside again. And when I came back I felt only slightly less awful and still barely able to function.
Few people know that eczema is a disability. The people around me have constantly downplayed my experiences and the impact the disease has had on my daily life. When I hid my condition, people didn’t take me seriously and if I was honest, they didn’t want to be around me. It was a lose-lose situation.
The eczema affected me so badly that it took me an extra year to graduate from high school. It felt like the world would go on without me.
I’ve tried pretty much every medication and a few alternative therapies to get my atopic dermatitis under control. I sought advice from paediatricians, dermatologists and allergists. I rubbed on topical steroid creams of various potencies and got steroid injections. I’ve tried phototherapy, which is essentially a tanning booth that hits you with UV rays. I used antihistamines and various lotions to try and tame the itching. Nothing helped.
I took strong pills that suppressed my immune system. I remember the warnings on the bottles saying these drugs were for people who had just had an organ transplant. That was pretty scary. I just wanted my skin to stop breaking out.
I’ve also tried many fashionable skincare trends over the years, such as drinking 10 cups of water a day or rubbing coconut oil on my skin. None of them worked. Neither did the herbal remedies recommended by my family.
My doctor tested me for allergies and pricked my skin to see if hives would break out. During a test, my doctor put patches of common allergens on my back. The tape irritated my skin so much it itched for the entire 3 days the test lasted.
I participated in a clinical trial of a biologic drug to treat psoriasis. I stayed in this study for a full year, but the drug didn’t help me.
By the time 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 on the news about dupilumab (Dupixent) and it looked very promising. I turned to my doctor, Emma Guttman-Yassky, MD, at Mount Sinai in New York. By that time I had moved to California in hopes that the warm climate would cleanse my skin. I said dr Guttman-Yassky that I really wanted to take this new drug and she helped speed up the process with my insurance company.
It’s a very expensive drug, so many insurance companies want you to “prove” you need it. They demand a full 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 finally qualifying for a patient assistance program.
When I got the drug, it took a while for it to work. It was very gradual. But eventually 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 go away. And when I put steroid creams on, they actually worked for the first time.
It took me 6 months to a year before I could experience the full effects of the drug but today I see a big difference. When I was growing up, my whole body was covered in eczema. Now I just have a few patches here and there. It’s very manageable. Most of the time I don’t even realize it’s there.
Unfortunately, there is no cure for atopic dermatitis. I still get flare-ups and I have to be careful not to be outside too long because the wind can dry 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 failed high school. Now I’m studying mechanical engineering at the University of California, Berkeley. It was day and night for me.