WHAT IS EPIDERMOLYSIS BULLOSA (EB)?
Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, is often pervasive and debilitating, and is in some cases lethal before the age of 30. There is no treatment or cure. Daily wound care, pain management and protective bandaging are the only options available. Those born with the disease are often called "Butterfly Children" because their skin is as fragile as the wings of a butterfly. While many who live with the milder forms of EB can lead long and productive lives, the list of manifestations and secondary complications in the more severe forms is long and requires multiple interventions from a range of medical specialists. Those forms of EB result in disfigurement, disability and early death, in some cases in the first few months of life.
FACTS ABOUT EB AND DEBRA OF AMERICA
- EB affects 1 out of every 20,000 live births in the U.S.
- The cost of specialized bandages can exceed $10,000 per month
- People with EB may have as many as 6 surgical procedures a year
- In 2012, we shipped 200 boxes of supplies, valued at over $300,000 to people with EB