In the 38 years that I’ve been living with recessive dystrophic epidermolysis bullosa (EB), I have learned that those of us with the condition, as well as those who care for us, must adapt over time to the extra preparation the disease requires. When I was a child,…
Expressing My Experiences Through Music – Leslie Morris
Leslie, 38, was born with recessive dystrophic epidermolysis bullosa. He lives in Ontario, Canada, and is studying to be a social worker. Leslie has been playing piano and singing since he was a child.
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ColumnsWhy hobbies are important in life with epidermolysis bullosa
When I reflect on my experience with recessive dystrophic epidermolysis bullosa, one thing that has helped me get through the toughest times is my hobbies. My mother always told me that from the time I began talking, I was also singing. She knew this could become an important part…

My mother taught me at a young age not to let recessive dystrophic epidermolysis bullosa (RDEB) define who I am or let it get in the way of who I want to be. I hoped to show others that I was just like everybody else and wanted to be…
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- 17 years later, I’m still learning how to navigate EB — and parenthood