My Life With Moderate to Severe Atopic Dermatitis

By Ashley Ann Lora, as told to Stephanie Watson

I was diagnosed with atopic dermatitis when I was 2 years old. I don’t remember much of it at that age, but my parents sure do. The redness and bumps on my face are obvious in almost every photo of me from back then. It’s very clear from those pictures just how much the condition truly affected me.

I remember sleeping with my parents to try to keep myself from scratching my skin all night. I missed a lot of days of school, especially when it got severe.

There were so many things I felt like I couldn’t do because of eczema. It stopped me from playing sports, hanging out with my friends, and doing what “normal” kids do. I shed a lot of tears during that time.

Finally, there was a moment when the eczema went dormant. It was the best 2 years of my life up to that point. For the first time, I was able to grow out my nails and wear short-sleeved shirts. I truly believed that my eczema was gone. But then, on a family trip to an amusement park, I got super sick and the eczema came back with a vengeance. My dream of being eczema-free was gone in a matter of hours.

Tests and Treatments

Because eczema and allergies are closely related, I went through allergy testing. My doctor made all these little pricks on my back and applied different substances to see if I was allergic to them. There must have been 50 or 60 different marks on my back. I was allergic to almost every one of them, including trees, grass, and even certain types of rubber.

I went to a lot of doctor appointments from elementary school all the way up to high school. But from high school to college, I had given up on doctors because every visit was the same. I’d go into the exam room, the doctor would look at my skin, and within 5 minutes I’d walk out with a prescription for topical steroids.

The steroids would help temporarily, especially when my atopic dermatitis got really bad. But it felt like a Band-Aid, because eventually it would come back even worse. Then I’d have to go through the whole process again.

I had a love-hate relationship with mirrors growing up. I didn’t feel good about myself for a very long time. It was hard. Eczema affected me physically, socially, and psychologically. It felt very lonely because I thought I was the only one in the world living with this condition.

My Healing Journey

November 2014 was the beginning of my healing journey. I was in the middle of one of the worst flares of my adult life. I tried going through the same routine of using topical steroids, but this time it didn’t work.

I said, “enough is enough” and started doing my own research on eczema. I learned about topical steroid withdrawal and started to go through that process. It was rough. I had used steroids for more than 20 years. When I went off them, I had severe withdrawal symptoms that left me bedridden for almost a year and a half.

I lost half of my hair and part of my vision. My skin looked like a combination of snake and elephant skin. I shed so much that I constantly had to vacuum my bed and every corner of my house. It was like my body was going through a process of transforming itself.

In the middle of withdrawing from steroids, I got into a clinical trial of the biologic drug dupilumab (Dupixent). That was a game-changer. With that drug, I was finally able to start enjoying life. My skin was the clearest it had ever been. I felt normal!    

In 2017, my skin was doing so well that I started to withdraw from dupilumab. I wanted to see how my skin would do without it. I wouldn’t recommend that approach for everybody, but I had confidence that my body could heal itself.

I’m currently not taking any medication. I’ve been focusing on more holistic practices like meditation, therapy, exercising, and eating foods that make me feel good. I’ve learned what works for me by seeing what has worked for other people.

Regaining Control

The biggest lesson I’ve learned during my journey is that my eczema is correlated with my emotions. A lot of people say stress triggers their eczema. For me, anger, sadness, and depression trigger it, too. As I’ve become more aware of my emotions, I see how they affect me and I’ve learned to control them through meditation and breathing.

Years ago, I let eczema take over my life. I would get into an itching cycle and my whole world would crash down around me. I lost a lot of who I was because of it. I don’t remember much of my childhood because the eczema was so traumatic and it consumed so much of what was good about my life.

I’ve done a full 180 since then. When I began accepting my eczema and figuring out how I could work with it, I got my life back. There was even a point when I began referring to my eczema as “she.” She became my best friend. When she flared up, I would ask her how we could work together to heal. By personifying my eczema and relating to her instead of seeing her as my enemy, I started healing more quickly.      

I still flare up, but atopic dermatitis no longer controls what I get to do on a particular day. My condition is no longer the deciding factor in what I wear, where I go, and who I hang out with.

In 2015, I started calling myself an eczema warrior. I am a warrior, in a sense, because I’ve courageously conquered my eczema (mentally more than physically) and continue to do so. I’ve come to terms with my eczema. I’m proud of her and I’m proud of how far we’ve come together.      

Photo Credit: ViDi Studio / Getty Images

Ashley Ann Lora, Garfield, NJ

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