Epidermolysis bullosa (EB) is a relatively unknown disorder that affects one out of every 20,000 live births. As of today, there is no cure or treatment— daily wound care, pain management and preventive bandaging are the only options for care.
EB is a rare connective tissue disorder with many genetic and symptomatic variations. Yet, all forms share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Children with EB are often called butterfly children, because their skin is as fragile as a butterfly’s wings. And like butterflies, their lives are often short.
For infants with EB, a necessity like wearing a diaper causes blisters and skin tears. Even an everyday event, like taking a bath, is a painful ordeal. Many will be confined to a wheelchair early in their lives and lose use
of their hands and feet by the age of 10. Others will develop a deadly form of squamous cell carcinoma by age 15.
EB is always painful, is often pervasive and debilitating and, in some cases, is lethal before the age of 30. It affects both genders and every racial and ethnic background equally.