Epidermolysis Bullosa or EB, is a rare genetic connective tissue disorder that affects 1 out of every 17,000 births. There is no treatment or cure. There are many variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma.
Those born with Epidermolysis Bullosa are often called “Butterfly Children” because as the analogy goes, their skin is as fragile as the wings of a butterfly. While many who live with milder forms of EB can lead long and productive lives, the list of manifestations and secondary complications in the more severe forms is lengthy and requires multiple interventions from a range of medical specialists. Those forms of EB result in disfigurement, disability, and in some cases early death.
For more in dept information on EB, please check out Dystrophic Epidermolysis Bullosa Research Association of America or debra for short.
