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Jonny Kennedy, The Boy Whose Skin Fell OffDebRA UK is the national charity working on behalf of people with the genetic skin blistering condition, Epidermolysis Bullosa (EB), the condition suffered by the Boy Whose Skin Fell Off.

Epidermolysis Bullosa (EB) is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds.

It is likely to affect 1 in 17,000 live births and it is estimated that there are currently 5,000 people with the condition in the UK.
Because EB is an inherited condition (it cannot be caught), which is passed on genetically from parents to children, first time parents often do not know that they are carriers and will have no prior warning that the child will be affected, until birth.

The condition has a number of distinct forms. At its mildest, the blistering is confined to the hands and feet making holding things and walking extremely painful.

DebRA volunteer with Natasha Kaplinski In more severe forms all the body is affected and the wounds heal very slowly, giving rise to scarring, physical deformity and significant disability.

For many affected by the condition the blistering is not limited to the skin, but also affects the inner body linings, such as the mouth and oesophagus. The eating of solids is, in these cases, almost impossible, and the disposal of the body waste incredibly painful. When this condition applies, malnutrition is often a consequence, further reducing the body’s resistance to infection.

People with the more severe types of EB also have an exceptionally high risk of developing skin cancers, shortening their lives by approximately 30-40 years. In its most severe form, the condition is fatal in infancy.

DebRA is dedicated to enabling people with EB to help themselves and each other maintain the best possible quality of life. Their fundraising goes to support four main areas of support for EB suffers; adult nursing services, children’s nursing services, advice for new parents and a social care team, and they are also a major contributor to research funding that aims to find the cause and a possible treatment for the condition.

Like any small charity Debra is always short of funds, and while individual donations are always appreciated, there are also lots of other ways of fund raising.

So if you can spare a few minutes or several days to help, take a look at their A-Z of fundraising ideas [here].

If you don’t want to organise something yourself but would like support them by taking part in one of their events, start by checking out their events diary [here].

Alternatively you may want to see about getting your company involved with DebRA, so take a look at their company funding section for ways to do this [here].

For more on DebRA, EB and ways that you can help visit the DebRA website at

You can watch The Boy Whose Skin Fell Off: The Director’s Cut all this week on Community Channel [more]



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