When I was born, my parents had never heard of Epidermolysis Bullosa (EB). But they learned everything they could very quickly to be able to take care of me.
They did 3-hour bandage changes every night when I was an infant. And because my mother was a nurse, she took such good care of me that I've never had to be hospitalized for anything. Ever.
My grandmother became super involved with and supportive of debra after I was born. She found many resources to help me. Just knowing that there’s an organization out there that’s looking to help make things better is such a comfort.
Growing up with EB was rough. Not being able to play sports or join in with games and activities with other kids definitely made me feel lonely. And as I was losing my hair and slowly becoming bald, I gained stares from people when I went out in public. Because of the stares, I finally decided to start wearing wigs in high school.
Each day is different. One day, I may not be able to walk. The next, you may see me laughing, dancing, and having all sorts of fun.
I also had a skin blistering autoimmune disease that was officially unnamed, but looked and acted a lot like bullous pemphigoid so that's what my dermatologist treated it as. It started developing in February of 2018 and my doctors officially told me I had no more traces of it in September of 2023.
It caused severe itching to the point of me scratching my skin off & still not satisfying the itch. At the worst, my body was 70% covered in breakouts from the itching.
My doctor put me on prednisone and azathioprine to treat it, with hydroxyzine as needed for intense bursts of itching (which I still take when that happens). I was on prednisone for about 3 years and azathioprine until remission in 2023.
It was one of the worst things I've ever experienced. I thank God that He's healed me of it.
But through the treatments and doctors' visits, I got another skin biopsy which further confirmed and solidified my EB diagnosis. I was initially diagnosed with Junctional about 6 weeks after birth in 1997, but with all the advancements in medical technology since then, this biopsy confirmed that I have Junctional non-Herlitz with a missing collagen protein.
Fast forward to now, I've been through college and University and earned both an Associates and Bachelor's degrees. And I've found an online community who is so kind and supportive of me.
I'm so blessed. I believe I'm only here today by the grace of God and extensive care of my mother.
Something that I wish people would know about EB is that each type is different. Just because you see one person who is wheelchair bound and 70% covered in bandages doesn't mean the other person who's walking on two feet without a bandage in sight doesn't mean they don't both have EB.
Be thankful for each one. You still have the opportunity to educate no matter your current circumstances.
- Hannah R., Living with Non-Herlitz Junctional Epidermolysis Bullosa
debra of America is proud to support Hannah in her EB journey. We are committed to improving the lives of those impacted by EB through direct-to-patient programs, education, advocacy, and research.
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