United Survivors with Epidermolysis Bullosa

The United Survivors with Epidermolysis Bullosa (USEB) is a voluntary organization whose mission is to help people with epidermolysis bullosa become more self-reliant. Epidermolysis bullosa (EB) is a genetic skin disorder characterized clinically by blister formation from mechanical trauma. There are three main types with additional sub-types identified. There is a spectrum of severity, and within each type, one may be either mildly or severely affected. EB ranges from being a minor inconvenience requiring modification of some activities, to being completely disabling and, in some cases, fatal. Friction causes blister formation. Blisters can form anywhere on the surface of the skin, within the oral cavity and in more severe forms may also involve the external surface of the eye, as well as the respiratory, gastrointestinal and genitourinary tracts. In some forms of the disease, disfiguring scars and disabling musculoskeletal deformities occur. Currently, there is no cure for EB. Supportive care includes daily wound care, bandaging, and pain management as needed.