Epidermolysis Bullosa Inversa Dystrophica

Overview

Type of disease: Rare conditions

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 “Inversa Dystrophica”. This is a more severe form that causes blisters to appear on the trunk of the people’s bodies, along with in and around their mouth, near the eyes, and sometimes the throat as well. Though they have blisters in more locations than people with other forms, their blisters tend not to scar.

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