told by Karen Chen to Stephanie Watson
I have had atopic dermatitis for as long as I can remember. When I was little, I remember getting a lot of rashes on my joints – my elbows and the inside of my knees. I’ve been itchy all the time.
My pediatrician and other doctors I visited at the time said it was normal for a child to have eczema. They told me I would get rid of it eventually.
) persistent itching
I was so itchy that I had trouble sleeping. I sleep in a long-sleeved shirt so I don’t scratch my skin at night.
My whole life revolves around satisfying my eczema. I check the weather every day. I don’t go out if it’s very dry or windy. Just my hair hitting my face in the wind irritates my skin.
I used to wear mostly dark clothes. My skin bleeds because I always have open wounds from scratching and I’m afraid of getting my white clothes dirty.
I am self-conscious and I do my best to hide my skin. Even in summer, I wear long sleeves. Sometimes I don’t leave the house when eczema looks particularly severe.
missed
I felt excluded from normal childhood activities. Many of them aggravate my skin. For example, I can’t swim because it dries out my skin and makes my eczema flare up. If I sweat too much while exercising, I’ll break out in itchy hives. When my friends want to go out for a bite to eat after school, I feel too horrible to join them.
My eczema didn’t grow like my doctor expected. Instead, it started to get worse in high school. I was itchy, couldn’t concentrate in class, and couldn’t sleep at night. I started getting more and more behind. Because I didn’t want to tell the teacher that eczema was the culprit, I met a student who didn’t try very hard.
I wish you all to understand how chronic diseases affect people. Whenever I had to miss high school, I would tell my teachers and friends that I was out because I was sick. For most others, the time to be sick is limited—as long as it takes to overcome a cold or other infection. There was an expectation that I would be fully recovered and back to school within a week. But because my condition is/is chronic, whenever I get “sick” with a severe flare-up, I’m bedridden without any timeline for recovery. It could be a few days, but more likely weeks and months before I stop burning and can go out again. And when I did come back, I just felt less scary and still barely working.
Few people realize that eczema is a disability. People around me have been belittling my experience and the impact this disease has had on my daily life. If I hide my condition, people don’t take me seriously, and if I’m honest, they don’t want to come near me. It’s 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 moved on without me.
try everything
I tried almost all medicines and some alternatives for my atopic dermatitis. I went to a pediatrician, a dermatologist Seek advice from an allergist. I applied topical steroid creams of various strengths and injected steroids. I tried phototherapy, which is essentially a tanning room that shoots UV rays at you. I use antihistamines and various lotions to control itching. Nothing helps.
I take a powerful pill that suppresses the immune system. I remember the warning on the bottle saying these medicines are for people who have just had an organ transplant. That’s pretty scary. I just want my skin to stop breaking out.
I’ve also tried a lot of trendy skincare trends over the years, like drinking 10 glasses of water a day or rubbing coconut oil on my skin. None of them work. Neither did the herbs my family recommended.
My doctor did an allergy test on me and punctured my skin to see if it broke out in hives. During one test, my doctor put some common allergens on my back. The tape was so irritating to my skin that it was itchy for the entire 3 days of testing.
I participated in a clinical trial of a biologic drug used to treat psoriasis. I was in that study for a full year and the medication didn’t help me.
By the time I was 16, my doctor stopped telling me that my eczema would improve with age. That’s when they realized it wasn’t going away.
gradually clear
I wish you all to understand how chronic diseases affect people. Whenever I had to miss high school, I would tell my teachers and friends that I was out because I was sick. For most others, the time to be sick is limited—as long as it takes to overcome a cold or other infection. There was an expectation that I would be fully recovered and back to school within a week. But because my condition is/is chronic, whenever I get “sick” with a severe flare-up, I’m bedridden without any timeline for recovery. It could be a few days, but more likely weeks and months before I stop burning and can go out again. And when I did come back, I just felt less scary and still barely working.
Few people realize that eczema is a disability. People around me have been belittling my experience and the impact this disease has had on my daily life. If I hide my condition, people don’t take me seriously, and if I’m honest, they don’t want to come near me. It’s 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 moved on without me.
try everything
I tried almost all medicines and some alternatives for my atopic dermatitis. I went to a pediatrician, a dermatologist Seek advice from an allergist. I applied topical steroid creams of various strengths and injected steroids. I tried phototherapy, which is essentially a tanning room that shoots UV rays at you. I use antihistamines and various lotions to control itching. Nothing helps.
I take a powerful pill that suppresses the immune system. I remember the warning on the bottle saying these medicines are for people who have just had an organ transplant. That’s pretty scary. I just want my skin to stop breaking out.
I’ve also tried a lot of trendy skincare trends over the years, like drinking 10 glasses of water a day or rubbing coconut oil on my skin. None of them work. Neither did the herbs my family recommended.
My doctor did an allergy test on me and punctured my skin to see if it broke out in hives. During one test, my doctor put some common allergens on my back. The tape was so irritating to my skin that it was itchy for the entire 3 days of testing.
I participated in a clinical trial of a biologic drug used to treat psoriasis. I was in that study for a full year and the medication didn’t help me.
By the time I was 16, my doctor stopped telling me that my eczema would improve with age. That’s when they realized it wasn’t going away.
My doctor did an allergy test on me and punctured my skin to see if it broke out in hives. During one test, my doctor put some common allergens on my back. The tape was so irritating to my skin that it was itchy for the entire 3 days of testing.
I participated in a clinical trial of a biologic drug used to treat psoriasis. I was in that study for a full year and the medication didn’t help me.
By the time I was 16, my doctor stopped telling me that my eczema would improve with age. That’s when they realized it wasn’t going away.
I am always looking for new treatments. The other day I saw a story on the news about Dupixent that looked promising. I contacted my doctor at Mount Sinai, New York, Emma Guttman-Yassky, MD. I had moved to California by then because I wanted the warmer climate to help clear my skin. I told Dr. Guttman-Yassky that I really wanted to take this new drug, and she helped speed up the process for my insurance company.
This is a very expensive drug, so many insurance companies want you to “prove” you need it. They ask you to provide an exhaustive list of everything you’ve tried and evidence that nothing on the market has worked for you. I had to go through an extensive denial and appeals process before I was finally eligible for a patient assistance program. Once I got on the medication, it took a while to take effect. This is very gradual. But at some point, I realized that if I had a scab, it would go away within 3 months instead of the 3 or 4 years it used to take to clear up. The first time they really worked was when I used steroid creams. It took me 6 months to a year to experience the full effect of the drug, but today I saw a huge difference. Growing up I had eczema all over my body. Right now I only have a few patches here and there. This is very manageable. Most of the time I don’t even notice it’s there.
Unfortunately, there is no cure for atopic dermatitis. I still have flare-ups and I have to be careful not to be outside for too long as the wind can dry out my skin. But compared to my previous one, it was really easy to handle.
I feel better than I have ever felt in my life. The year before I started dupilumab, I failed high school. Now I am studying mechanical engineering at UC Berkeley. For me, it’s already day and night.
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Photo credit: danielle71/Getty Images
Karen Chen, Berkeley, CA.
