DEBRA was founded by Phyllis Hilton.

The history of DEBRA

The history of DEBRA dates from 1963 when Phyllis Hilton had a daughter called Debra who was born with dystrophic EB. When Debra Hilton was born very little was known about EB, and Phyllis was told by clinicians at the time that there was nothing they could do to treat Debra and that all she could do was take her home and look after her until she died. Phyllis ignored this advice and instead looked for ways to treat Debra’s skin using cotton dressings.

Many years later in 1978 when Debra was 15, Phyllis was contacted by a woman who wanted help and advice following the birth of her baby who also had EB. Phyllis was shocked and saddened that nothing appeared to have changed over the years, and she felt that nothing would change unless she and other parents acted.

From that point onwards Phyllis began writing to magazines, radio stations, celebrities, and hospitals to organise a meeting for parents of children with EB. 78 people attended the very first meeting, which was held in Manchester, and it was this meeting that led to the charity officially being formed as the world’s first EB patient support group, taking its name from Phyllis’ daughter. The DEBRA name was also intended as an abbreviation of Dystrophic Epidermolysis Bullosa Research Association (D.E.B.R.A).

Sadly, on the 21 November 1978, Debra Hilton passed away, but this wasn’t the end of DEBRA but rather the start. In the 40+ years since, DEBRA has grown in scope with sister organisations located in 40 countries, a worldwide research programme, and strong clinical and nursing services. When Phyllis founded the charity, her daughter only had cotton rags to protect her skin and ill-informed medical professionals often thought that the condition was contagious and that there was little that could be done to alleviate the continual pain the condition imposes. Today, all UK patients have access to state-of-the-art dressings, diagnosis of the specific genetic type of EB is routine and medical research trials are happening across the world.

 DEBRA's research impact.

 
There is much more to be done to find effective treatments and ultimately cures for EB but thanks to Phyllis Hilton, who passed away aged 81 on the 2 October 2009, and the huge contribution she made to the EB community, her memory lives on.

 

Our journey to finding effective treatments and cure(s)

DEBRA is the largest UK funder of EB research, and in the top 15 UK-based research funders across all diseases and conditions investing in global research. We have invested over £20m and been responsible, through funding pioneering research and working internationally, for establishing much of what is now known about EB. Now is the time to accelerate the pace of discovery, to find new treatments, and ultimately cure(s) for EB.

Below are some of the key milestones on our journey:

 EB research timeline.