October 25th to October 31st is National Epidermolysis Bullosa (EB) Week. EB is a rare genetic disorder that affects the skin. Annually, EB week focuses on local community events to raise EB awareness and fundraisers to support EB research.
Almost 200 children each year are born with some form of EB. About one in five carry one of the defective genes that cause EB. It is not contagious. In a person with this disease, the layers of skin lack important connective tissue. This leads to skin separation, frequent blistering and recurring wounds. Even minor trauma can cause severe damage and extensive wounds.
Currently, there is no cure for EB. The only treatment consists of caring for the wounds, managing the pain and bandaging the skin to prevent further harm. Supplies are costly and not always covered by insurance. Preventing infection is part of the daily routine for EB families. In severe forms of EB, internal organs and bodily systems may also be affected.
Children with this disorder are often called "Butterfly Children" because their skin is as fragile as butterfly wings. At UMass Memorial Medical Center in Worcester, MA, the pediatric dermatology staff and physicians run a twice monthly EB clinic and actively promote EB awareness. Each summer they host a free overnight camp for children with skin disorders called Camp Liberty.
For more information on Epidermolysis Bullosa, visit www.debra.org.