There are four main types of epidermolysis bullosa:
Dystrophic epidermolysis bullosa
Epidermolysis bullosa simplex
Hemidesmosomal epidermolysis bullosa
Junctional epidermolysis bullosa
Another rare type of epidermolysis bullosa called epidermolysis bullosa acquisita, is an autoimmune disorder.
Epidermolysis bullosa can vary from minor blistering of the skin to a life-threatening form that affects other organs. Most types of condition start at birth or soon after. It can be hard to identify the exact type of epidermolysis bullosa a person has.
Having a family history of the disease, and especially having a parent with it, is a risk factor.
Depending on the form of the condition, symptoms can include:
Growth rate will be checked often for a baby who has or may have epidermolysis bullosa.
The goal of treatment is to prevent blisters from forming and avoiding complications. Other treatment will depend on how bad the condition is.
Take good care of your skin to prevent infections.
Follow your health care provider's advice if blistered areas become crusted or raw. You might need regular whirlpool therapy and to apply antibiotic ointments to wound-like areas. Your health care provider will let you know if you need a bandage or dressing, and if so, what type to use.
You may need to use oral steroid medicines for short periods of time if you have swallowing problems. You may also need to take medicine if you get a candida (yeast) infection in the mouth or throat.
Take good care of your oral health and get regular dental check ups. It is best to see a dentist who has experience treating people with epidermolysis bullosa.
Eat a healthy diet. When you have a lot of skin injury, you may need extra calories and protein to help your skin heal. Choose soft foods and avoid nuts, chips, and other crunchy foods if you have sores in your mouth. A nutritionist can help you with your diet.
Do exercises you get from a physical therapist to help keep your joints and muscles mobile.
If your infant has any blistering shortly after birth, call your health care provider. If you have a family history of epidermolysis bullosa and plan to have children, you may want to have genetic counseling.
Genetic counseling is recommended for prospective parents who have a family history of any form of epidermolysis bullosa.
During pregnanc, chorionic villus sampling to test the fetus is available. For couples at high risk of having a child with epidermolysis bullosa, the test can be done as early as week 8 - 10 of pregnancy. Talk to your obstetrician and genetic counselor.
To prevent skin damage and blistering, it may help to wear padding around injury-prone areas such as the elbows, knees, ankles, and buttocks. Contact sports should be avoided.
Patients with epidermolysis bullosa acquisita who are on steroids for longer than 1 month may need calcium and vitamin D supplements to prevent osteoporosis.
Kevin Berman, MD, PhD, Atlanta Center for Dermatologic Disease, Atlanta, GA. Review provided by VeriMed Healthcare Network. Also reviewed by A.D.A.M. Health Solutions, Ebix, Inc., Editorial Team: David Zieve, MD, MHA, David R. Eltz, Stephanie Slon, and Nissi Wang.