BUTTERFLY CHILDREN BENEFIT FROM L A LINE DANCERS’ GENEROSITY
The ladies of L A Line Dancers, based in Los Alcázares,donated an amazing 1800€ to DEBRA Spain, which is the national charity working on behalf of people in Spain with the genetic skin blistering condition Epidermolysis Bullosa (EB).Founded in 1993,DEBRA Spain (the Butterfly children charity) is a non-governmental organisation formed by people with EB, a team of social and health professionals specialised in EB, as well as friends and collaborators.
Butterfly Skin is the common name for Epidermolysis Bullosa or EB.
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.
EB is likely to affect 1 in 17,000 live births and it is estimated that there are currently 1000 people with the condition in Spain. 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. In its least severe forms, 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. To find out more, visit the DEBRA Spain website: http://www.pieldemariposa.es/
Led by Diane Daniels, the L A Dancers meet once a week at The Arches, Urb. Oasis, Los Alcázares and always welcome new members. Email: [email protected] for further information.