I was diagnosed with EB at 18 months old. My mom discovered it because, as a baby, I loved baths — but one day, I started screaming horribly the second she put me in the water. Up until then, she hadn’t noticed any sores or blisters, so she took me to the doctor. From there, I was transferred to Chicago, where I received my diagnosis.
Growing up with EB came with many hardships. I always felt like an outcast because I didn’t look like other kids. I was bullied a lot because nobody understood me, and the only place I felt truly accepted was with my family. Every time I wore shorts or flip-flops, people would stare. But when I walked into a family party, there were no stares — just acceptance and understanding.
Even now, at 24 years old, I have so many unanswered questions. Every time I visit a dermatologist, I end up educating them. I even saw the head of dermatology at the University of Chicago. She brought 12 interns into the room and had them ask me any questions they could think of because, in her words, "You'll never see this again in your practice." After that visit, I felt hopeless, wondering if I’d ever get any real answers.
Throughout my childhood, doctor after doctor put restrictions on what I could do. But my mom got some advice from another EB parent who told her that I would learn my own limits and not to keep me too restricted. That advice changed everything.
Growing up, my mom was a single parent, and my dad didn’t provide financial support. At one point, I reached out to debra of America because the cost of dressings and bandages was becoming too much for my mom, especially with everything else she had to provide for my siblings and me. debra sent us a huge box full of bandages completely free. It lasted so long that, for months, my mom had one less financial worry on her mind.
Doctors told me I couldn’t do many things that "normal kids" could do — ride a bike, play sports, get piercings or tattoos, wear jeans, or even wear regular shoes. But I’ve always challenged myself and pushed my own limits. I played softball for six years, cheered for ten years and coached for four, danced for a year, and played basketball for a year. I have 15 piercings and four tattoos (and counting). My wardrobe is no different from anyone else’s. I never let anyone tell me what I could or couldn’t do. I found out my limits on my own terms. For example, when I played basketball, it caused constant blisters on my feet. I finished out the season because I had made a commitment, but after that, I knew it wasn’t worth the pain.
I wish people knew that I don’t want sympathy. I’m not a victim. Honestly, being different has given me a unique outlook on life. Empathy for the pain we go through is appreciated, but sympathy isn’t what I want. I love being different, and I never judge anyone based on physical appearance.
- Kaylyn, Living with Dominant Dystrophic Epidermolysis Bullosa (DDEB)
debra of America is proud to have supported Brooklyn and her family through our Wound Care Distribution Program. 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.
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