About EB

Epidermolysis Bullosa (ep-ih-dur-MOL-uh-sis buhl-LO-sah), or EB — The Worst Disease You’ve Never Heard Of.™ is a very rare and painful genetic connective tissue disorder that affects 1 child out of every 20,000 live births in the United States (that means about 200 children a year are born with EB). Because their skin is so fragile, they are often known as ‘Butterfly Children.’ EB afflicts both genders and all racial and ethnic backgrounds equally. EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. More severe forms of EB result in disfigurement, disability, and early death, usually before the age of 30. In fact, some forms of EB are lethal in the first few months of life. As of today, there is no cure or treatment. Daily wound care, pain management, and protective bandaging are the only options available. Learn more here: http://debra.org/whatiseb