Children can be very curious and ask anything that comes into their minds. As a young child in elementary school with recessive dystrophic epidermolysis bullosa (RDEB), I would get curious looks and stares from many students at my school. Some children would ask me questions like, “What happened to…
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.
I started elementary school in the mid-1990s. The internet was still in its early stages, and there wasn’t nearly as much research and knowledge about epidermolysis bullosa (EB) as there is today. Before I began school, my mom taught me how to talk about my condition because she…

The process of seeking and obtaining employment can be daunting for anybody. Job searching requires confidence, creating professional résumés, and researching multiple job opportunities to figure out which would be the best fit. As someone born with epidermolysis bullosa (EB), I had to consider additional factors as I began…
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…
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,…
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…
Recent Posts
- Placental vesicles may calm chronic inflammation in RDEB, study shows
- Study suggests JEB treatment could be tailored to specific mutation
- Why I refer to EB as a rare skin condition rather than a disease
- Clinic in Florida is first in Southeast to offer gene therapy for fragile skin
- Fiber supplements don’t cut laxative use in children with severe EB