EB, Epidermolysis bullosa, also called Butterfly Skin is an incurable, rare and serious genetic condition that affects the skin.
The skin becomes as delicate as a butterfly wing. Simply touching the surface of the skin causes severe blistering and wounds that never heal. Blistering also occurs internally (in the mouth, oesophagus, intestine, airways, urinary tracts and even the inside of the eyelids) leading to further suffering and serious health problems.
DEBRA Spain, founded in 1993, is a non profit-making organization formed to provide support and to improve the quality of life of those affected by EB. The charity works hard to provide the following:
- Emotional and medical support to families and carers, as well as social services professionals with information and guidance.
- Fully trained nurses who travel throughout Spain visiting families in their own homes.
- Information and advice on all aspects of the disease, coordinating with doctors and health services to ensure patients receive the correct treatment.
- Support for research programmes into a possible cure.
- Events and activities to promote awareness and raise funds through numerous events and charity shops.
- A number of yearly national meetings to bring affected people together, as well as conferences for medics and other professionals.
- A link to DEBRA in all other countries.
- Continuous work to obtain private and public grants.
Find out more about this amazing charity here