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). Since EB is a genetic disease, there is currently no cure or treatment for EB. The current standard of care is supportive which includes daily wound care, specialized atraumatic dressings and pain management.
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, often pervasive and debilitating, and is in some cases lethal during the early stages of life. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB. For a more in-depth and comprehensive understanding of Epidermolysis Bullosa, please also check out debra of America’s explanation by clicking here.
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.