What is Epidermolysis Bullosa?

Baby born with Epidermolysis Bullosa

Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). No treatment nor cure has been found as of now. There are many genetic and symptomatic variations of EB, but they all share the prominent symptom of extremely fragile skin that form blisters and can tear from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management and protective bandaging are the only options available for people with EB to lessen the possibility of any form of friction or trauma to their skin.

Despite having EB, she's strong

Those born with Epidermolysis Bullosa are often given the nickname "Butterfly Children" due to the analogy that goes, their skin is as fragile as the wings of a butterfly. Although many of those who live with the milder form of EB lead a long and productive lives, the list of manifestations and secondary complications in the more severe forms are lengthy and requires multiple interventions from a range of medical specialists. The rate of mortality of those who are diagnosed with EB is low, except in cases of severe EB. Those form of EB results in disfigurement, disability, and in some cases, death.