My name is Nisha, and I was born with a recessive generalized form of EB Simplex. Growing up, I faced a lot of challenges: blisters, painful wounds from even slight friction, scarring, and constant itching. I dreaded bath time and the pain I’d experience from the application of bandages and draining of blisters. I remember how much I wished to be able to throw on clothes immediately after showering, just like everyone else I knew.
To their credit, my parents didn’t raise me in a bubble. They wanted my life to be as normal and happy as possible. My dad would distract me during dressing changes by reading books aloud (and after he finished the books, he read the back of lotion bottles); to this day, I’m a voracious reader. We took many family vacations, and I discovered that sun and water are great for my skin. My parents and brother taught me to play tennis at age 7 or 8, and later I even joined my high school team (fun fact: I was the only girl on it!) The first time I went skiing with my best friend, the boots caused blisters on my shins, so my mom created wraparound padding with foam gauze and Velcro – it worked like a charm.
Aside from the physical discomfort of having EB, I endured questions about my appearance, which made me intensely uncomfortable. As my condition became somewhat less visible over the years, I kept it hidden and stayed silent about it to avoid being judged, pitied, or treated differently. I focused on doing what I could control – graduating from college, working in marketing, getting an MBA, traveling (I’ve been to 26 countries and counting), and community service. Along the way, I was blessed to meet so many awesome people. In the back of my mind, however, I knew that most of them couldn’t get to know me completely since they didn’t know about a significant aspect of my life. Still, I wasn’t ready to make myself vulnerable.
But recently, something started to shift. I realized that by being more open about having EB, I could raise awareness for the condition and do my small part in educating others about the differences that exist among us to build a more understanding culture. And of course, awareness is the first step towards securing much-needed funding for EB treatments. So, I told my story on social media during EB Awareness Week in October 2019. A month later, I was interviewed on camera about my experience living with EB at the San Francisco Rare Disease Film Festival, which will be shown at the next festival. And in February 2020, I went to Washington DC for Rare Disease Week on Capitol Hill to be educated on federal legislative issues, meet other advocates, and share my story with members of Congress to encourage them to support policies that benefit rare disease patients. Now, I plan to keep using my voice to bring the EB community one step closer to a cure.