DEBRA is the national charity working on behalf of people affected by Epidermolysis Bullosa (EB) – a rare genetic condition which causes the skin to blister and shear at the slightest friction, or even spontaneously. There are at least 5,000 people living with this devastating condition in the UK and 500,000 worldwide. We also have families in Berkshire affected by EB. It is the worst condition that many people have never heard of.
EB has a number of distinct forms from blistering to the hands and feet to more severe cases where the whole body is affected, giving rise to scarring, physical deformity and significant disability. Blistering can also affect inner body linings, such as the mouth and oesophagus and, in its most advanced form, EB can be fatal in infancy.
DEBRA helps fund an expert nursing and social care staff to work directly with families affected by EB. We also commission world-leading research into the condition with the aim of finding effective treatments and, ultimately, a cure for EB. Fundraising is essential as DEBRA does not receive any Government funds. Without funds there will be no research to eliminate this awful condition.