This Epidermolysis Bullosa Awareness Week, debra of America’s EB Nurse, Catherine Doernbrack MSN, RN, CPNP, is tackling the internet’s top searched questions about EB. Check out the top seven below!
Navigating the internet for information can be overwhelming, especially when it comes to rare conditions like EB. That’s where our EB Nurse Educator Program comes in. At no cost to you, our EB Nurse is here to answer your questions as they relate to many areas of Epidermolysis Bullosa (EB) care.
Since the program’s launch in 2002, our EB Nurse Educator Program has been a trusted source of accurate, timely information for individuals with EB and their family members, the medical community, and the general public.
Top Questions
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.
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.
Get Involved
National Epidermolysis Bullosa Awareness Week (Annually, October 25-31) is a time to increase awareness of EB, to promote the need for a cure, and to spur advocacy on behalf of the thousands of individuals and families living with EB in the United States.
