“My body feels like it is always on fire and pain is a constant in my life.” - Paul

EB is a group of life-threatening skin conditions that affects children from birth.

EB—or Epidermolysis Bullosa—is devastating, and currently without a cure.

What is EB?

What is EB?

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.

What is EB?

The Details

There are 4 EB subtypes:
• Simplex
• Junctional
• Dystrophic
• 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.

Skin is the body’s largest organ, so to say that EB impacts every aspect of an individual’s life is a gross understatement.

Among its most important functions, skin is the first line of defense to protect the body from trauma and infection. Everything we do in life impacts our skin – walking, eating, playing, sitting, writing, hugging, sleeping – the list goes on.

Children with EB are often born missing large areas of skin leaving gaping wounds that never heal; walking and standing are impaired over time because their toes become fused from repeated injury; the simple joy of holding a crayon to draw becomes impossible because their fingers fuse and contract, turning their young hands into mittens.

During a typical day, an individual with EB undergoes a painful bath and bandage change. Given the large areas of skin that can be missing, bathing can be a long and excruciating process. Bandage changes can last anywhere from 30 minutes to several hours and bandages can cost a family as much as $14,000 per month.

For a child with EB, the joyful act of participating in sports – such as Little League or youth soccer – is often out of the question due to the skin tears, blisters and scarring that would result. Falling down on the playground can remove all the skin from their little palms or produce blisters on their knees the size of oranges. Simply put, EB often prevents a child from just being a child.

We are committed to advancing treatments and finding a cure so that children with EB can grow up to live full, pain-free lives.