[1] "Debra" is the first name of the daughter of Phyllis Hilton, the original founder of the organisation in the UK, which began as a support group for parents, guardians and carers of other young children with the condition.
Sufferers of the severest form die prematurely of skin cancer (their life expectancy is usually reduced by 30–40 years); in some, death occurs in infancy.
In more severe cases, the whole body is affected and wounds heal very slowly, giving rise to scarring, physical deformity and significant disability.
DEBRA UK is the national medical research charity and patient support organisation for individuals and families affected by EB.
The charity also commissions research into the condition with the aim of finding effective drug treatments and, ultimately, a cure for EB.