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. There are at least 5,000 people living with this devastating condition in the UK and 500,000 worldwide. DEBRA focuses its work in two areas; the charity provides care and support to individuals and families living with EB and funds pioneering research to find effective treatments and, ultimately, a cure for EB.
Alisa is seven years old and has Junctional Epidermolysis Bullosa generalised intermediate. When she was born, the youngest of four sisters, her parents – Joe and Lee – knew immediately there was something wrong with her angry, pink skin. The initial days and weeks after Alisa’s birth were tense while they awaited a diagnosis. Originally it was thought that Alisa had the most severe type of EB (fatal in infancy), but luckily a better prognosis followed, albeit one which was no less painful or life changing.
Specialist EB nurses funded by DEBRA provided a lifeline to Alisa’s parents in the early days, showing them how to change her dressings, lance the blisters that developed all over their daughter’s body and clean her open wounds; a harrowing daily experience dreaded by both Alisa and her parents. Joe and Lee said: “A life without DEBRA would be a life filled with even more pain and we want to ensure that DEBRA is able to support other families affected by this debilitating condition, particularly the extra EB nursing support we received when Alisa was first born.”
DEBRA is very grateful for the support from the Foundation which has helped fund pioneering research and the EB healthcare service (now funded in partnership with the NHS).
DEBRA has received over £185,800 from the DM Thomas Foundation since 2006.