The American Academy of Dermatology has honored board-certified dermatologist Karen Wiss, MD, FAAD, as a Patient Care Hero for her role in treating a patient born with an extremely rare skin disease caused by a genetic mutation. The condition, known as recessive dystrophic epidermolysis bullosa (RDEB), is commonly called “the butterfly disease,” because it causes skin to be extremely fragile and blister easily after minor rubbing or scratching. It affects fewer than one in 1 million people.
To support pediatric patients with isolating conditions like RDEB, Dr. Wiss, a dermatologist at UMass Memorial Health Care and professor at the University of Massachusetts Medical School, co-founded the Connecticut location of Camp Discovery, a sleepaway camp for children with chronic skin diseases organized by the American Academy of Dermatology. Both the camp and Dr. Wiss’ care have been crucial for Connecticut resident and RDEB patient Jonathan Gionfriddo, who is now a senior counselor and the host of the camp talent show.
Dr. Wiss has treated Gionfriddo, now 20, since he was three years old. His skin and mouth are so sensitive to friction that he requires a feeding tube and is confined to a wheelchair. Treatment for RDEB is intensive. It takes four hours a day to wrap and redress Gionfriddo’s bandages, and he has had numerous surgeries to treat complications like MRSA.
“It’s hard to find people who can truly understand what my life is like and what I’m going through. Together, Dr. Wiss and Camp Discovery helped me realize I wasn’t the only person struggling with my disease, which improved my confidence,” Gionfriddo said. “Being treated by people who not only know how to physically treat my condition, but also listen, encourage and support me when I advocate for myself, makes a huge difference.”
Working with Gionfriddo led Dr. Wiss and her colleagues to publish a journal article in Pediatric Dermatology on how to safely adapt hospital care for children with RDEB.
“I am consistently inspired by Jonathan’s courage and enthusiasm. Through it all, he’s been both a strong advocate at our hospital and a true role model for everyone at Camp Discovery,” Dr. Wiss said. “Jonathan has helped us provide better and more holistic care, and it’s incredibly rewarding and special to see him grow into a mentor for others.”
The AAD created the Patient Care Heroes program to recognize physicians who transform patients’ lives by utilizing their expertise and collaborating with other physicians to treat serious skin disease.
“The social isolation that many skin diseases create for patients can often be overlooked,” said board-certified dermatologist George J. Hruza, MD, MBA, FAAD, president of the AAD. “Dr. Wiss’s efforts to not only physically treat patients like Jonathan, but to also address their social, mental and emotional health needs, is a model for our field.”
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