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 at that age, but my parents do. The redness and bumps on my face are visible in almost every photo of me from back then. From these pictures it is very clear how much the condition has really affected me.

I remember sleeping with my parents to keep me from scratching my skin all night. I missed many days of school, especially when things got bad.

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

Finally there was a moment when the eczema went dormant. It’s been the best 2 years of my life up to this point. For the first time I could grow my nails and wear short-sleeved shirts. I really believed my eczema was gone. But then, on a family trip to an amusement park, I became super ill and the eczema came back with a vengeance. My dream of being eczema free was gone within hours.

tests and treatments

Since neurodermatitis and allergies are closely linked, I underwent an allergy test. My doctor put all these little stitches 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 everything, including trees, grass, and even certain types of rubber.

From elementary school to high school, I attended many doctor’s appointments. But from high school through college I had given up on doctors because every visit was the same. I walked into the exam room, the doctor looked at my skin and within 5 minutes I came 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 worse. Then I would have to go through the whole process again.

Growing up I had a love-hate relationship with mirrors. I haven’t felt comfortable in my own skin for a very long time. It was hard. The eczema affected me physically, socially and psychologically. I felt very lonely because I thought I was the only one in the world living with this disease.

My healing journey

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

I said “enough is enough” and started doing my own research on eczema. I found out about topical steroid withdrawal and started going through the process. It was hard. I had been using steroids for over 20 years. When I stopped taking them, I had severe withdrawal symptoms that kept me bedridden for almost a year and a half.

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

In the midst of coming off steroids, I entered a clinical trial of the biologic drug dupilumab (Dupixent). That was a game changer. With this drug, I could finally start enjoying life. My skin was clearer than ever. I felt normal!

In 2017, my skin was doing so well that I started stopping dupilumab. I wanted to see how my skin would do without it. I wouldn’t recommend this approach to everyone, but I had faith that my body could heal itself.

I am currently not taking any medication. I’ve focused on more holistic practices like meditation, therapy, exercise, and eating foods that make me feel good. I’ve learned what works for me by seeing what has worked for others.

regaining control

The biggest lesson I’ve learned on my journey is that my eczema correlates with my emotions. Many people say that stress triggers their eczema. I also experience anger, sadness and depression. As I became more aware of my emotions, I see how they affect me and I have learned to control them through meditation and breathing.

Years ago I let eczema take over my life. I would get caught in an itchy cycle and my whole world would collapse 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 consumed so much of what was good in my life.

Since then I’ve done a whopping 180. Once I started accepting my eczema and figuring out how to deal with it, I got my life back. There was even a point where I started referring to my eczema as “her”. She became my best friend. As she flared up, I asked her how we could work together to heal. By personifying my eczema and referring to her instead of seeing her as my enemy, I began to heal faster.

I’m still in turmoil, but eczema no longer dictates what I’m allowed to do on any given day. My condition is no longer the determining factor in what I wear, where I go, and who I hang out with.

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