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Categories: Medical, [ View All ]
Debra Charity Profile
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. 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.
Whilst considerable progress has been made in recent years in understanding EB and identifying the genes that cause the condition, there is as yet no effective treatment or a cure.
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Debra Volunteer Information
Our charity shops division continues to grow. If you feel you would like to volunteer, please get in touch with us.
Every shop opened brings greater recognition of DebRA’s work and provides wonderful opportunities for Members and friends to help in a practical way, as well as providing new opportunities for making friends and creating new interests. If you would like to be involved as part of this exciting programme, we would like to hear from you.
Debra
In The News
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Residents' donation to skin disease charity
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322 days ago From Lynn News
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Archived Article
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LYNN, U K - WORSHIPPERS have donated =A3500 to an organisation which supports people suffering from an incurable genetic skin condition. Residents of Dennis Sneezum Court sheltered housing in Downham have a monthly church service conducted by Fr Richard Fordham ...
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Charity shop just for the kids
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395 days ago From Portsmouth News
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Archived Article
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PORTSMOUTH, U K - By Emma Judd It will raise money for DEBRA, a national charity which supports people suffering from the painful skin blistering condition Epidermolysis Bullosa. The condition can become so bad swallowing becomes almost impossible, and fingers can fus ...
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Charity run for little Jack
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514 days ago From Scarborough Today
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Archived Article
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SCARBOROUGH, U K - A SCARBOROUGH nursery nurse is set to raise hundreds of pounds for charity after being inspired by a special little boy. Sarah Duckworth, who works at Wooden Horse nursery in Wykeham, is taking on the Great North Run in aid of =93Debra=94 =96 a chari ...
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Shop raises thousands for charity
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596 days ago From stv.tv
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Archived Article
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LONDON, U K - Sainsbury's in Hamilton has spent the year supporting DebRA and presented the final cheque of =A311000 to the charity's fundraiser Jaye Hamilton this week. DebRA is the national charity which works on behalf of people in the UK with the genet ...
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