When I was diagnosed with atopic dermatitis as a kid, I never imagined that decades later, my healing journey would lead me to participate in a pioneering clinical trial that would not only transform my skin but also give purpose to my suffering.
My eczema journey began early—one of my earliest memories is from my parents’ restaurant in New Jersey when I was about four or five. I remember walking into the kitchen, smelling seafood, and experiencing an uncontrollable full-body reaction. I was “uncontrollably itchy” — a feeling I’ve dealt with throughout much of my life.
Fast forward to 2014, I was a recent college graduate browsing Craigslist for side hustles. I stumbled upon a clinical trial for asthma
(another condition I live with) and signed up, honestly forgetting about it until I received a call months later. When I showed up at the office in Los Angeles, I was going through topical steroid withdrawal syndrome (TSW). The doctor immediately noticed my skin condition and said, “I think there’s another clinical trial that I’m running that I think you would be fantastic for. It’s showing very promising results.”
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That moment was pivotal—I fell into what would become the DUPIXENT clinical trial during its early phases.
Taking the Risk
I consider myself privileged to have a brother who’s also a doctor. When I got the informed consent form, I sent it to him asking, “Let me know if it’s a yes or no, and I’ll move forward.” At that time, I didn’t have the tools or language to advocate for myself yet, so I depended heavily on his knowledge.
When he immediately approved, the process began. It was a blind study, but I could tell something was working. Every two to three weeks after receiving the injection, I would immediately feel different internally—less itchy and able to sleep better. These effects would last about two weeks until my next injection.
By phase three, I was receiving injections weekly, and my healing progressed unimaginably. My skin cleared over 100 percent, if that was even possible; even the discoloration disappeared completely. For the first time in my life, I was receiving compliments on my skin! I took three vacations that summer and made sure to wear shorts even in winter because everybody was gonna see these legs that I’ve been hiding all these years.
Challenges Along the Way
The journey wasn’t without bumps. The clinical trial ended abruptly, leaving me thinking, “Wait a minute. What am I supposed to do?” I felt like I had become just a number rather than a participant. There were a few anxiety-filled weeks where I worked with my insurance and the patient support service (Dupixent MyWay) to figure out my next steps.
Eventually, I received the medication again and decided to become my own guinea pig. With my doctor’s knowledge, I started weaning
myself off the drug, gradually spacing out injections from weekly to biweekly, then three weeks, then four. By November 2018, I had completely come off DUPIXENT, and today I manage my condition drug-free, with only occasional antibiotics for staph infections.
Lessons Learned and Giving Back
The biggest lesson from my experience is the importance of taking risks: “Your healing could be on the other side of this risk.” If I hadn’t joined that clinical trial, who knows where I’d be today? Even now, about 95% of my body remains clear of eczema—a huge win for me.
The second lesson is to ask for support. Reach out to those with knowledge to help you make informed decisions about your health journey.
As a woman of color, I recognize the additional significance of my participation. Although I initially had hesitations about clinical trials (especially one found on Craigslist!), having my brother’s medical expertise to guide me made all the difference.
Finding Purpose in Pain
When asked how it feels to have contributed to a treatment that helps others with eczema, one phrase immediately comes to mind: “I feel worthy of my suffering.” Living with eczema for over thirty years hasn’t been easy—the bone-deep itchiness, crying myself to sleep, lack of rest—but being able to join a clinical trial and now support an online community makes all that suffering meaningful.
I had to experience those trials to help the next person. I’m forever grateful for my experience and what I get to do daily to support others on similar journeys.
For anyone considering a clinical trial, especially my fellow eczema warriors, know that sometimes it’s bigger than just you. Even if a treatment doesn’t work, your participation makes a difference for the community. There are always options besides sitting and suffering—whether it’s joining a trial or taking other small actions to support yourself.
We need more stories from people who have gone through clinical trials, especially people who look like us, to show others there are alternatives. Your healing journey may just be one brave step away.
