DebRA is a charity that carries out research and offers support to families suffering from 'one of the worst diseases you've never heard of'; Epidermolysis Bullosa (EB).
EB is a genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds.
The whole body can be affected both internally and externally with wounds healing very slowly, giving rise to scarring, physical deformity and significant disability. Even the simplest of tasks such as eating, drinking and the disposal of bodily waste are incredibly painful. Malnutrition is often a consequence, further reducing the body's resistance to infection.
People with 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 and as yet there is no effective treatment or cure.
FAQs
How can you help?
£25 could pay for one hour of research to find a treatment for EB
£50 could fund two additional home visits, which is critical for those finding it difficult or impossible to travel
£100 could pay for an essential changing unit required during the frequent and lengthy dressing changes
£300 means a family could enjoy a week's holiday in one of DebRA's specially adapted holiday homes
If you would like to find out more, please visit DebRA's website
or go to our next page Living With EB
