DebRA

DebRA is the name of British and American medical research charities dedicated to the curing of Epidermolysis bullosa.

Debra is the name of the daughter of the original founder of the organisation in the UK. Although the acronym of Dystrophic Epidermolysis Bullosa Research Association has been used by DebRA UK in the past, the organisation provides information, research funding and support for all forms of EB, not just Dystrophic, which is one of three main sub-types of the condition: the others being EB Simplex and Junctional EB.

The DebRA US organisation have continued to use the aforementioned acronym DEBRA for the Dystrophic EB Research Association of America since their formation in 1980.

Epidermolysis bullosa is a genetic condition that in its most severe forms affects all of the body's linings, the skin, the linings of the mouth and oesophagus, etc. - even the eyes. In its most severe forms the linings will blister or rip away from the flesh under the lightest of frictions, for example, rolling over in bed can cause skin to tear away from behind the ears, and the sufferer may wake up with up to 30 blisters each morning.

There is no treatment bar the lancing and draining of these blisters to stop their growth. Sufferers of the severest form die prematurely of skin cancer (their life expectancy is usually reduced by 30–40 years); in some, death occurs in infancy. Each day sufferers face a battle against fluid loss and infections due to open wounds. Sufferers of the severest forms have difficulties with feeding due to the rawness of their mouths and often have to have a feeding tube fitted. There are milder forms of the condition that only affect the hands and feet.

Read more about DebRAIn The UK, In The USA

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