Identifying the exact type can be hard because there are many subtypes of EB. Within each type or subtype, a person may be mildly or severely affected. The disease can range from being a minor inconvenience to completely disabling, and fatal in some cases. Most types of EB are
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
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
If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.
If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.
You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
Gene Therapy Creates Replacement Skin to Save a Dying Boy
November 16, 2017
New Rare Disease Patient Video Series
July 18, 2016
The following diseases are related to Epidermolysis bullosa. If you have a question about any of these diseases, you can contact GARD.
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
I have a son with epidermolysis bullosa and I would like to know if there are any dietary recommendations. See answer
I have a "mild" form of EB. Diagnosed at 8 years old. Peeling and blistering of fingers/feet. If I pass this gene on to my child will they also have a mild form or will it be a severe form of EB? Neither one of my parents have this disease, nor do my siblings. See answer
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? See answer