Rare Disease Day in Aid of DEBRA
Basepoint Chepstow chose DEBRA as its charity to support Rare Disease Day on Wednesday 28th February.
Basepoint and DEBRA have worked together on events previously and it was great to have another opportunity to raise awareness of the condition EB and raise money for such a worthy cause.
DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB) – a painful genetic skin blistering condition which, in the worst cases, can be fatal.
Epidermolysis Bullosa (EB) is a group of genetic skin conditions which cause the skin to blister and tear at the slightest touch. Those born with EB have skin so fragile they are called 'butterfly children' – their skin is quite simply as fragile as the wing of a butterfly.
Painful open wounds and sores form where this exceptionally fragile skin is damaged – in some cases, internal linings and organs are also affected. Complications as a result of secondary infection and extensive scarring are factors that people living with EB often have to face.
Tragically, certain types of EB can be fatal in infancy and others are severely life-limiting. We estimate that there are more than 5,000 people living with EB in the UK, and 500,000 worldwide.
DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had EB – the charity was the world’s first EB patient support group.
Their vision is of a world where no one suffers from this painful genetic skin blistering condition. DEBRA focuses its work in two areas: fund pioneering research to find effective treatments and, ultimately, a cure for EB and providing care and support to improve the quality of life for individuals and families living with EB.
The charity is very much in the thoughts of those of us at Basepoint Chepstow as our Handyman, Trevor Baker, has been diagnosed with the condition from an early age and has to make certain adaptions to daily life to ensure it does not become a barrier.