About DebRA
EB - Epidermolysis Bullosa – is a genetic condition where the skin breaks at the slightest touch, causing blistering and painful open wounds. These blisters have to be lanced, otherwise they will spread and cause infection.
The lancing is extremely painful and children often have to take morphine in order to endure this twice-daily procedure. At its worst, EB is fatal in infancy.
With severe EB constant blistering creates scar tissue, which causes disability and deformity. Fingers and toes fuse together and people with EB have regular operations to open their hands out.
For many sufferers the blistering is not limited to the outer body surfaces, but also affects the inner body linings, such as the mouth and oesophagus. When this happens, people with EB will, at regular intervals, have surgery to widen their oesophagus, which has narrowed through scar tissue build-up. The eating of solids is sometimes almost impossible; in the past when this has happened, malnutrition has often been a consequence.
Nowadays, babies with this kind of EB are often given a gastrostomy, to ensure that they are consuming nutrition and adequate calories. Children in this situation will probably need more calories than a child without, because their bodies are constantly fighting infection.
People with the more severe type of EB also have a significantly high risk of developing a fatal skin cancer, typically in their early thirties.
DebRA is the only support group and medical research charity in the UK working on behalf of people living with EB. DebRA provides specialist EB children and adult nurses, who travel at short notice to visit children and adults in their homes. DebRA nurses will visit newborn EB babies and guide parents and other medical staff about appropriate care, such as dressings and wound healing.
There is also an EB ward at Great Ormond Street Hospital staffed by DebRA nurses, where children with EB have regular checks and where specialist surgery can take place. DebRA leads the world in research projects likely to lead to a cure and successful treatment for the condition. People affected by EB rely very heavily on DebRA funded research to provide a long-term answer to the illness.
Progress in research has enabled us to:
- identify the genes that cause EB
- conduct tests at pregnancy to identify if the baby has EB
- provide much improved dressings and wound healing
- study the cause of skin cancer amongst EB patients
- work towards finding a cure for EB
Our history
DebRA was formed in 1978 by a group of parents of affected children, at a time when only some 200 sufferers were known to the medical profession in the UK.
The basic aims were to stimulate knowledge of and interest in Epidermolysis Bullosa (EB) for the benefit of the sufferers and their families and to raise money for medical research into the condition. There are now thought to be around 5,000 people with EB in the UK.
From humble origins and aspirations and, as a result of its own initiative, DebRA has stimulated interest about the condition throughout the world. Fully autonomous branches of DebRA exist in more than 30 countries; including America, Australia, New Zealand, most European countries, South Africa and Venezuela. DebRA UK co-ordinates liaison between these groups and is active in the European Union.
DebRA is managed by a Committee of Trustees elected by the Membership for a period of three years with retirement by rotation. The Trustees are a voluntary body. In April 1983, DebRA hired its first full-time worker who was given the title “Director” from 1986.
DebRA now employs more than 90 staff with increasing numbers employed or volunteering through the chain of DebRA Charity Shops.
DebRA is a self-help association and funds generated through numerous fundraising activities have enabled the charity to sponsor many vital areas of support for sufferers and their families.