A life of constant burning pain
An individual with EB lacks a critical protein that binds the layers of skin together. Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement, and constant gaping open wounds. EB affects the body inside and out. Blisters occur all over the body, as well as in the eyes, mouth, esophagus, and other internal organs. Living with EB is like living with third degree burns.
Sufferers can spend hours everyday being bandaged with dressings to protect and medicate their wounds. EB causes severe pain, disfigurement, and in too many cases, an early death from systemic failure, infection or from aggressive forms of skin cancer. And because most people have never heard of EB, a lack of research holds back an end to this devastating condition.