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The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
Epidermolysis Bullosa, Dermolytic
Overview
Epidermolysis Bullosa Dystrophica is a group of genetic conditions that causes an individual's skin to be very fragile and to blister easily. In the past, they were often called “Butterfly Children” because their skin is as delicate as a butterfly’s. Individuals with epidermolysis bullosa dystrophica have such sensitive skin that blisters can form from something as gentle as them scratching their own skin or it rubbing against their clothes. The reason for their fragile skin is a specific gene mutation affecting proteins which give skin its qualities of flexibility and strength. Cases can range from moderate to severe depending upon the individual and what type of epidermolysis bullosa dystrophica they have. Some may experience intense scarring from the blisters while other people may not scar at all. People are born with epidermolysis bullosa dystrophica and it is usually visible a few days after birth when blisters will begin to appear. Epidermolysis bullosa dystrophica is a hereditary disease and 6.5 per 1 million babies born in the U.S. are affected. One type of epidermolysis bullosa dystrophica is “Dermolytica”. This is a more severe form where blisters will appear on the person’s mouth and intestines, in addition to on the outer body.
Trusted Medical Sites
Genetic & Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
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AAMDSIF Online Academy (webinars)
200+ FREE webinars for patients, families and caregivers about rare blood cancers and bone marrow failure diseases.
Educational Resources
Publications, links to patient conferences and webinars
Disease Information
Descriptions of various rare blood cancers and bone marrow failure diseases.