Boy with epidermolysis bullosa.Epidermolysis Bullosa (EB) is a group of rare genetic conditions that affect one in every 50,000 children. Epidermolysis Bullosa is hereditary, meaning that the genes that cause it may be are present in other family members.

People with EB have extremely fragile skin that blisters and tears from friction or trauma. It can seriously affect internal organs as well, requiring care from many different medical specialists. EB occurs in both genders and every racial and ethnic background. It is usually diagnosed at birth, but can be diagnosed at any age.

Depending on the type of EB, as well as genetics, the symptoms, severity, long-term outcomes and quality of life differs from person to person affected with EB. With milder forms of EB, skin may only blister on the hands and feet only and may not lead to scarring or loss of function. However, in more severe forms, blistering may occur on the skin anywhere on the body and may include secondary injury to internal organs. This can result in disfigurement, disability and can even be life-threatening. Children with the condition are sometimes referred to as “butterfly children” because their skin is as fragile as a butterfly’s wings.