The facts about EB

1 out of every 50,000 live births is affected with some type of EB.

Because EB is an inherited condition (it cannot be caught), it is genetically passed 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.   At it’s 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 esophagus.  The eating of solids is, in these cases almost impossible and the disposal of body waste incredibly painful.

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

There is as yet no effective treatment or cure.

One in 227 of us has a defective gene that cause EB