There's a daily challenge for patients living with EB — it's a very painful and overwhelming disease," says Dr. James Feinstein, Beall's childhood doctor and the pediatric director for the Epidermolysis Bullosa Multidisciplinary Program at Children's Hospital Colorado in Denver [and CU School of Medicine instructor]. A lack of collagen connecting the top and bottom layers of skin causes painful blistering externally and internally, often on the lining of the throat.