EB Awareness Week 2023

The life expectancy of someone with Epidermolysis Bullosa varies greatly depending on the type of EB they have. Mild cases of EB are not fatal. People with severe forms of EB have a life expectancy that ranges from infancy to young adulthood.

Epidermolysis Bullosa is caused by a genetic defect in the protein that connects the layers of skin. This genetic mutation results in skin that can blister and tear easily with even minor everyday friction. EB can also impact other bodily systems, including the mouth, esophagus, urethra, airway, muscles, kidneys, heart, eyes, nails, and teeth.

Epidermolysis Bullosa (EB) is a complex condition with a wide range of symptoms and severity. In some cases, EB can be incredibly severe, even affecting life expectancy. Individuals and families dealing with EB face significant challenges that often require a multidisciplinary approach, including medical care, pain management and emotional support. While EB can impact many facets of daily life, those battling EB exemplify remarkable resilience and strength, leading full and inspiring lives, pursuing their passions and supporting each other.

We don't have a cure yet; but research continues towards this goal.

See Clinical Trials

See Approved Treatments 

People with Epidermolysis Bullosa can have babies. Knowledgeable prenatal care and careful planning for childbirth are important for expectant mothers with EB.

Check out the EB Guide on Pregnancy, Childbirth, and Aftercare

Epidermolysis Bullosa can be diagnosed at any age. EB can be diagnosed prenatally with genetic testing through amniocentesis. Many infants are diagnosed shortly after birth if they are born with wounds or blisters. There have been many members of the EB community who were diagnosed much later in life.

Learn more about Laboratory Diagnosis