Epidermolysis Bullosa Awareness Week is recognized annually during the last week of October (Oct. 25-31). Epidermolysis bullosa, or EB, is a group of inherited blistering disorders characterized by exceptionally fragile skin and debilitating chronic wounds. EB affects one out of every 20,000 births in the United States and occurs in every racial and ethnic group. With EB, blisters occur from even the slightest trauma — think of getting wounds from such fundamental activities as crawling, walking, sitting and eating. For this reason, those born with EB are often known as “butterfly children,” for their extremely fragile skin. There is no cure for EB. Current management relies on daily wound care, pain control and blister prevention. Clinical studies on gene, cell and protein therapies show great promise, but more funds are needed to expand this research.
The UF College of Medicine Dermatology Interest Group promoted EB Awareness Week through an awareness and advocacy tabling event Oct. 29 in the Sun Terrace. Our goals were to increase awareness of this debilitating skin disease and make connections with others in the health care field who may play a role in the care of EB patients. Kol Berisha, a 4-year old boy with the recessive dystrophic form of EB, attended the tabling event to support the cause. He and his family are a reminder of the daily struggles, strength and courage demonstrated by those affected with chronic medical conditions like EB. Information brochures, provided by the Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), were handed out and the Dermatology Interest Group raised more than $200 to be donated to DebRA. For more information on this disorder and how you can help, visit www.debra.org.
Kimberly L. Merkel, M.D., is a 2008 graduate of the UF College of Medicine and an assistant professor in the department of dermatology.