EB is a group of life-threatening skin conditions that affects children from birth.
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 wounds that never heal. 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. EB causes severe pain, disfigurement, and in too many cases, an early death from an aggressive form of skin cancer. It is estimated that EB affects at least one in every 50,000 births. EB is not specific to any ethnicity or gender. Given that EB affects only 25- 30,000 people in the US, advancing this research relies on the generosity of individuals and corporations.
There are 4 EB subtypes:
• Kindler Syndrome
Within each type there are multiple subsets. The difference among them is the level at which a blister forms within the skin and which particular protein is missing or impaired. Within each subtype, severity can range from mild to severe.