Frequently Asked Questions (FAQs) About EB
Epidermolysis Bullosa (EB) is a group of genetic skin conditions that cause fragile skin that can blister and tear at the slightest touch. There are several forms of EB and conditions range from mild to severe. Depending on the type of EB and its severity, symptoms may include blisters, scarring, difficulty swallowing, malnutrition, tooth decay, deformed nails, white bumps on the skin and fused fingers and toes.
No. EB is a group of genetic skin conditions that children most often inherit from one or both parents. In some cases, EB is caused by a mutated gene in children with no family history of the disorder. Touching a blister or their skin will not pass the disease.
Not at this time. While there are promising clinical trials underway, there is no cure for EB. Currently, treatments for children with EB include applying antibiotic ointments to infections and wrapping the skin in special bandages to prevent damaging the skin. Medications can alleviate pain.
Complications from EB range from mild, where a person may not even know they have EB until adulthood, to very severe. Many children with EB have fragile skin, so everyday activities can blister the skin. In the most severe cases, children may have difficulty swallowing, fused hands or/and feet or be wheelchair bound, making everyday activities very difficult.
Yes. While there is no cure for EB, a daily routine of wound care and pain management can alleviate some, or many symptoms associated with EB. Some forms of EB may improve over time.
Yes. Phoenix Children’s Hospital has one of only four comprehensive, multidisciplinary pediatric EB clinics in the country. If a child has been treated by our specialists, they frequently continue care into adulthood. Adult patients have come to our EB clinic as new patients as well. It is vitally important that people with EB are seen often for skin cancer screenings. Our team also provides information, resources and provider referrals for adult patients.