When I was born in 1972, the doctors told my parents that the missing skin from about my waist down was a birth canal injury. When my skin continued to slough off as they applied friction, they didn't know what was wrong with me and sent me home telling my parents to make me comfortable. They didn't think that I'd survive.
My first brother was born two years later and was normal. It wasn't until my second brother was born in 1977, that my parents realized that this was a thing. I'm not sure how I was initially diagnosed with Epidermolysis Bullosa (EB).
During my childhood, I was never preventatively covered. I also didn't have the vocabulary to explain my condition. Throughout my childhood, I was kicked out of two public pools, kicked off an airplane, and caused an entire campground shower room to be shut down for deep cleaning. Needless to say, it was rough. By the way, all of these events were instigated by adults. Kids are just curious; the adults were cruel.
debra of America has definitely helped me become more knowledgeable about EB. When I gained Internet access in the early 1990s, debra was one of the first resources I came across about EB. In fact, it might have been the only one. I remember poring over the very primitive 1990s website and comparing my body with debra's descriptions of EB. I had been diagnosed with Simplex. It was through the site that I realized that I probably didn't have Simplex. It wasn't until genetic testing in my 40s that it was confirmed to be RDEB. I love the resources that debra has for parents and kids navigating school. I really wish I'd had all of that in the 1970s and 80s.
My doctor in Dallas saved my life. Although she's a pediatric dermatologist, she agreed to see me and she prescribed Vyjuvek at my first visit in October 2023. I found her through the debra database of doctors. I've also gotten help with would care supplies from debra.
I never let RDEB define me. I'm finishing my 26th year in public education - first as a classroom teacher and then as an administrator. I have three kids and I've been married for almost 31 years.
My RDEB is relatively minor. That has presented its own unique problems. We teach our kids not to stare at the person in the wheelchair or with the noticeable disability.
With my EB, if I wear pants and a long sleeve shirt, it's mostly undetectable. The problem comes when someone spots a blister or wound and they yell, "OH MY GOSH! WHAT HAPPENED!" It's always interesting to see how disinterested they become when I explain that this is all part of a skin disease and not some horrific accident. I'd rather not have the attention. Also, I use the handicap restroom when possible because the commode sits higher and I have muscle/tendon atrophy in my legs.
I wish people realized that, although rare, there are adults with RDEB who are living and thriving. With advances in science, we're going to continue to live longer. We need data on this aging population.
It is definitely a journey. I'm so grateful to have lived this long and accomplished what I have while living with RDEB.
- Jennifer Hazen
debra of America is proud to have supported Jennifer through our Wound Care Distribution Program and other services. Our Wound Care Distribution Program sends critical wound care supplies to thousands of families nationwide at zero cost to them. This essential program ensures that those with EB have access to the supplies they need to manage their condition, even when insurance falls short.
Join the fight against EB. Your tax-deductible donation ensures that no family faces the challenges of EB alone.