Epidermolysis bullosa
It is an inherited connective tissue disease causing blisters in the skin
One in every 17,000 children born in the UK will have EB, and in the UK there are currently 5,000 people living with it
Its severity ranges from mild to lethal
The skin is extremely fragile, and any minor friction will form blisters
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People with this condition have an increased risk of cancers of the skin, and many will eventually be diagnosed with it as a complication of the chronic damage done to the skin
Butterfly Children is a term often used to describe younger patients because the skin is said to be as fragile as a butterfly's wings
There is currently no cure for EB, so treatment aims to relieve the symptoms and prevent complications
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