Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder. There are many different variations of EB, but all share the common symptom of blistering skin that could tear and disintegrate due to any sort of minor movement or trauma. Blistering is not always confined to the outer skin of the body, esophagus, mouth, and inner lining of stomach is affected as well. Any victim of EB experiences constant pain can be extremely enervating and in some cases deadly before the age of 30. EB affects 1 out of every 20,000 live births. There are five major types of EB: Simplex, Junctional, Dystrophic, Kindler Syndrome and Aquisita. The severity of the disease can depend on the diagnosis of the type.
Children born with the disease are often referred to as “Butterfly Children” because their skin is just as fragile as the wings of a butterfly. What may cause minimal effort for any other individual can be a constant battle for those affected by EB. This includes difficulty swallowing or inability to wear clothing due to blistering which causes the body to be completely wrapped in special bandages.
Unfortunately, there is NO CURE for EB. However, improvement of symptoms can be made. This can include prevention of pain and infection, bandaging, surgeries, and care for wounds/blisters. Those requiring their entire bodies to be wrapped are in need of special bandages, which are in high demand but low supply. Additionally, consistent surgeries are needed to help those who have complications from the disease.