I was diagnosed with Epidermolysis Bullosa Pruriginosa, a rare subtype of Dystrophic Epidermolysis Bullosa (DEB). Having a rare form of EB gave me a lot of challenges growing up. It took doctors an awfully long time to diagnose me, allowing for experimentations with my skin until I was about 6-7 years old. It was not easy fighting in the blind, but me and my family have prospered and today, I stand 21 years of age with a lifetime of medical care and experience.
Once diagnosed, me and my mom went on to create Hunter’s Wish to Cure EB, a non-profit serving to aid and support those with EB. I have started treatment like Dupixent, which has been such an incredible impact on my life, and has actually caused for a lot of my skin to turn into nothing but scars. It is a miracle how well this has worked and has changed my life, and want to spread the news about how well this worked for me.
(A Quick Note from debra of America: For those with Epidermolysis Bullosa (EB) interested in Dupixent (Dupilumab), it may be helpful to speak with your healthcare provider to see if it's a suitable option for you. Additionally, there is an ongoing clinical trial for Dupilumab that you can learn more about here.)
As a kid, I was often bullied about my skin. I got a lot of stares, from kids to adults. After a while, it becomes pretty demoralizing, and has left me with crippling anxiety. I had to leave behind many sports, as they were often too rough to partake in, and would leave me bruised, battered and blistered. There were many sleepless nights, and I’d often be woken up by the sound of scratching myself or a hole opening up in my leg from scratching so hard.
Even with all of the negative, I always looked for the positives. I always treated myself as if I wanted to get better at everything I did. In high school, I started running—XC, indoor track, and outdoor track. All long-distance running, because I knew I could endure the pain. I went from being the worst kid on my team freshman year to one of the top runners on varsity my senior year. I’ve always looked at life with this drive for more, and I believe that is what keeps me sane.
debra of America has given me and my family so many resources and we have even traveled to some of the debra Care Conferences. debra has also been impactful because I’ve learned more about other conditions and it has made me more of an advocate for those who can’t advocate for themselves. I want to be the voice of those struggling with more painful, distressing versions of EB, as sometimes I know it’s hard to fight even with my type.
- Hunter
debra of America is proud to support Hunter on his EB journey. Through our Care Conferences and resources, we empower individuals like Hunter to best advocate for themselves.
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