The Life-Changing Journey of Overcoming Atopic Dermatitis
Living with atopic dermatitis, also known as eczema, can be a daily struggle. Karen Chen, a college student, shares her personal experience with this chronic skin condition. From her early childhood to her ongoing battle in high school, she opens up about the challenges and triumphs she faced along the way. In this article, we will delve deeper into the subject matter of atopic dermatitis, exploring related concepts and sharing practical examples and anecdotes to captivate readers.
1. The Invisible Battle: Living with Atopic Dermatitis
Atopic dermatitis can have a profound impact on a person’s physical and emotional well-being. Karen recalls her childhood, where she constantly itched and scratched her skin, making it difficult for her to sleep. To prevent further irritation, she wore long-sleeved shirts even in bed. This condition consumed her life, and she had to meticulously manage her daily routines based on weather conditions and clothing choices.
2. The Burden of Self-Consciousness and Isolation
Karen’s struggle with atopic dermatitis had a significant impact on her social life and self-confidence. She felt excluded from normal childhood activities such as swimming or exercising due to the potential flare-ups caused by these activities. The constant need to hide her skin and the fear of being judged left her feeling self-conscious and isolated. It even took her an extra year to graduate from high school, and she felt like the world moved on without her.
3. A Journey of Failed Treatments
Karen tried everything to manage her atopic dermatitis but found little success. From traditional medications to alternative therapies, she explored different treatments recommended by pediatricians, dermatologists, and allergists. Topical steroid creams, light therapy, antihistamines, and herbal remedies were all part of her quest for relief. Unfortunately, none of these options provided a long-term solution.
4. The Long-Awaited Solution: Dupilumab (Dupixent)
Eventually, Karen heard about dupilumab, a medication that showed promise in treating atopic dermatitis. She reached out to her doctor, Dr. Emma Guttman-Yassky, who helped her navigate the process of getting this medication and advocated for her with the insurance company. After a lengthy and challenging approval process, Karen finally gained access to the drug. Although the effects were gradual, she noticed a significant improvement in her condition, with scabs healing in months rather than years. Today, she experiences manageable patches of eczema, and her life has taken a dramatic turn for the better.
5. Living with Atopic Dermatitis: A Constant Battle
Despite the relief brought by dupilumab, atopic dermatitis remains a chronic condition without a cure. Karen still faces challenges such as asthma attacks triggered by her condition and the need to protect her skin from excessive wind exposure. However, compared to her previous struggles, she now finds her condition reasonably manageable. Recognizing the importance of raising awareness, Karen emphasizes the need for people to understand that eczema is a disability and not something to be minimized or dismissed.
6. Reclaiming Life and Pursuing Dreams
Karen’s story is one of resilience and determination. She went from failing high school to studying mechanical engineering at the University of California, Berkeley. The transformative effects of dupilumab allowed her to reclaim her life and pursue her dreams. Today, she feels better than ever before, and her journey serves as an inspiration for others living with atopic dermatitis.
In Summary
Karen Chen’s story sheds light on the challenges faced by individuals living with atopic dermatitis. From the invisible battles they fight daily to the pursuit of effective treatments, the journey is arduous. However, through resilience, support, and the right medical intervention, there is hope for a brighter future. As we continue to raise awareness and understanding about chronic skin conditions, it is crucial to remember that empathy and inclusivity can make all the difference.
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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 a lot of rashes where my joints are: the inside of my elbows and knees. It itched me all the time.
My pediatrician and the other doctors I saw at the time said it was normal for children to have eczema. They told me that in time I would get over it.
Constant itching
It itched so much that I had trouble falling asleep. He would put long-sleeved shirts on me in bed so I wouldn’t scratch my skin during the night.
My entire life revolved around taking care of my eczema. I would check the weather every day. If it was too dry or windy, it wouldn’t go out. Just having my hair hit my face in the wind would irritate my skin.
I used to wear mostly dark clothes. My skin bled because I always had open wounds from scratching and I was afraid of staining my white clothes.
I was so self-conscious that I did everything I could to hide my skin. He wore long sleeves, even in summer. Sometimes I didn’t leave the house when my eczema seemed especially bad.
Getting lost
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 cause an eczema flare-up. And if I sweated too much while exercising, I would get itchy hives. When my friends wanted to go out for a bite to eat after school, I felt too bad to join them.
I did not overcome my eczema as my doctors had predicted. Instead, it started to get worse in high school. It was so itchy that I couldn’t concentrate in class and couldn’t sleep at night. I started to fall further and further behind. Because I didn’t want to tell my teachers that eczema was to blame, I presented myself as a student who didn’t try very hard.
I wish people understood how chronic illnesses affect people. Every time I had to miss class in high school, I told my teachers and friends that I had missed class because I was sick. For most people, illness occurs over a finite period of time, the time needed to overcome a cold or other infection. There was the expectation that I would fully recover within a week and return to school. But because my condition was/is chronic, every time I got “sick” with a serious flare-up, I remained bedridden with no timeline for recovery. It could be days, but more likely weeks and months, before I stopped having asthma attacks and could go outside again. And when I came back, I felt a little less terrible and could barely function.
Few people realize that eczema is a disability. Those around me constantly minimized my experience and the effect the disease was having on my daily 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 around me. It was a lose-lose situation.
Eczema affected me so much that it took me an extra year to graduate from high school. I felt like the world moved on without me.
try everything
I have tried almost all medications and some alternative therapies to control my atopic dermatitis. I went to pediatricians, dermatologists, and allergists for advice. I applied topical steroid creams of various strengths and took steroid injections. I tried light therapy, which is essentially a tanning booth that blasts ultraviolet rays at you. I used antihistamines and various lotions to try to control the itching. Nothing helped.
I took strong pills that suppressed my immune system. I remember the warnings on the bottles, saying that these medications were for people who had just received an organ transplant. That was pretty scary. I just wanted my skin to stop breaking out.
I’ve also tried a lot of skincare fad 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 I broke out in hives. During a test, my doctor put common allergen patches on my back. The tape irritated my skin so much that it itched during the 3 days of the test.
I participated in a clinical trial of a biologic drug used to treat psoriasis. I stayed in that study for a whole year, but the medication didn’t help.
When I was 16, my doctors stopped telling me that my eczema would get better with age. At that moment they realized that it was not going to disappear.
Gradual cleaning
I was always looking for new treatments. One day I saw a story about dupilumab (Dupixent) on the news and it seemed very promising. I contacted my doctor, Emma Guttman-Yassky, MD, at Mount Sinai in New York. By then I had moved to California because I hoped the warm weather would help clear up my skin. I told Dr. Guttman-Yassky that I really wanted to take this new medication and she helped me expedite the process with my insurance company.
It is a very expensive medication, so many 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 denial and appeal process before finally qualifying for a patient assistance program.
Once I took the medication, it took a while 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 took to go away. And when I applied steroid creams, for the first time they actually worked.
It took me 6 months to a year to experience the full effects of the medication, but today I see a big difference. When he was a child, he had eczema all over his body. Now I only have a few patches here and there. It is very manageable. Most of the time I don’t even realize it’s there.
Unfortunately, there is no cure for atopic dermatitis. I still have asthma attacks and I have to be careful not to be outside 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. The year before starting dupilumab, I was failing high school. I am now studying mechanical engineering at the University of California, Berkeley. It’s been day and night for me.
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