Overview of Epidermolysis Bullosa, or EB in Children
Epidermolysis Bullosa (EB) is a rare, inherited disorder that causes affected individuals to have fragile, blister-prone skin which makes them susceptible to injury and open wounds, sometimes from the slightest touch.
While some kids with EB suffer from only mild symptoms, many children with EB have painful blisters on their skin that require constant care. In severe cases, children with EB can suffer from continuous pain, disfigurement, a shortened life span and are prone to having skin cancer with age.
Currently there is no cure for EB. As a result, it is vital for EB patients and their families to work in partnership with physicians, nurses, medical staff and social workers to learn how to prevent infections, manage pain and promote wound healing with daily wound care practices and bandaging.
The EB Clinic at Phoenix Children’s Hospital provides comprehensive care, resources and a supportive environment to help EB families manage the disease, care for wounds, prevent infection and find hope in promising new treatments and clinical trials.
Symptoms of EB
Children with EB can suffer from symptoms ranging from mild to severe, including:
- Blisters on the skin, especially in areas of friction
- Blisters in the throat and mouth– difficulty swallowing
- Deformed or absent nails
- Fused fingers and toes
- Hair loss (alopecia)
- Hoarse cough or cry
- Scarring of the skin
- Tooth decay
- White bumps on the skin (milia)
Additional information and resources about EB can be found at Debra.org