Fragile skin, strong spirit
Jonathan Gionfriddo's story
I have extremely fragile skin that can fall off or blister very easily because I was born with recessive dystrophic epidermolysis bullosa (RDEB). It takes about four hours a day just to wrap and redress my bandages, and it comes with a lot of other problems. I’ve had countless surgeries: everything from a collapsed lung to scar removal from my eyelids. It’s hard to find people who can truly understand what my life is like and what I’m going through.
My dermatologist, Dr. Karen Wiss, has been with me from the beginning, and she helped start the Connecticut location of Camp Discovery, the American Academy of Dermatology’s sleepaway camp for kids with skin diseases from across the world. I’ve attended every year and am now a senior counselor and host of the camp talent show. When I was younger, Camp Discovery made me more confident, and it was really valuable to see that I wasn’t the only person struggling with my disease. Now it’s rewarding to act as a big brother for the younger kids, and it’s my favorite way to get out of the house.
The team at UMass Memorial Hospital has saved my life many times. While it isn’t easy, my family and I have worked with the doctors to find ways to make patients like me more comfortable, such as keeping IVs in without using tape, which can rip my skin. Our work even led to a journal article in Pediatric Dermatology on how to safely adapt hospital care for children with RDEB.
Being treated by people who know about my condition, and who listen to me when I advocate for myself, makes a huge difference.
The dermatologist's perspective
“I am consistently inspired by Jonathan’s courage and enthusiasm. Epidermolysis bullosa is one of the most difficult conditions, and through it all he’s been not just a strong advocate at our hospital, but also a true role model for everyone at Camp Discovery. He’s helped me and countless other specialists learn how to provide better care — leading to concrete changes in our procedures — and it’s a special opportunity to see him grow into a mentor for others. ”
─ Karen Wiss, MD Director, Pediatric Dermatology, UMass Memorial Health Care, Worcester, MA