National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Epidermolysis bullosa



My mother has had epidermolysis bullosa for many years. She recently underwent total knee replacement surgery and another surgery to flush out a staph infection and has had wound healing problems, including pus, redness and fever. We are concerned about complications from infection and wanted to know if there is any research related to wound healing in patients with epidermolysis bullosa. Where can we read more information about treatment? How can we find a physician who is knowledgeable about this condition?


How might infections in individuals with epidermolysis bullosa be treated?

The chance of contracting a skin infection can be reduced by good nutrition, which builds the body’s defenses and promotes healing, and by careful skin care with clean hands and use of sterile materials. For added protection, a doctor may recommend antibiotic ointments and soaks.[1]

However, even in the presence of good care, it is possible for infection to develop. Signs of infection are redness and heat around an open area of skin, pus or a yellow drainage, excessive crusting on the wound surface, a red line or streak under the skin that spreads away from the blistered area, a wound that does not heal, and/or fever or chills. A doctor may prescribe a specific soaking solution, an antibiotic ointment, or an oral antibiotic to reduce the growth of bacteria. Wounds that are not healing may be treated by a special wound covering or biologically developed skin.[1]

More details about treatment, wound care and infection control can be obtained from the eMedicine and DEBRA web sites.

Last updated: 4/22/2010

Are there research studies looking at new treatments for wound healing in individuals with epidermolyisis bullosa?

ClinicalTrials.gov lists trials that are studying or have studied wound healing in individuals with epidermolysis bullosa. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
Last updated: 4/22/2010

How can I locate physicians or researchers who are knowledgeable about epidermolysis bullosa?

The Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DEBRA) offers a National Physician Referral Service that connects people suffering with epidermolysis bullosa to qualified and knowledgeable health care professionals in their communities. Click on the link above to learn more about this and other services offered by the DEBRA.
Last updated: 4/22/2010

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

Warm regards,
GARD Information Specialist

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  1. Epidermolysis Bullosa. National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). 2009; http://www.niams.nih.gov/Health_Info/Epidermolysis_Bullosa/default.asp. Accessed 4/22/2010.