Cost of project
DEBRA is a 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.
What is DEBRA?
DEBRA has two specialist units based at Solihull Hospital and at Birmingham Children’s Hospital. A lot of our EB patients move closer to the hospitals as they need regular treatment and care, we therefore have a large EB community in Birmingham and the surrounding areas. We have a vision of a world where no one suffers from the painful genetic skin blistering condition, EB.
DEBRA focuses its work in two areas:
• To fund pioneering research to find effective treatments and, ultimately, a cure for EB.
• To provide care and support to improve the quality of life for individuals and families living with EB.
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. EB is a genetic skin condition that is life limiting and extremely painful to live with. As it’s a rare condition, not many people have heard about it. DEBRA have a group of supporters who would like to host an event to raise money and awareness of this disease who are also EB patients themselves.
If successful, what will you use your LoveBrum funding for?
As mentioned previously, DEBRA would like to host an event ran by EB patients to help raise awareness of this condition. As the condition is so unknown, fundraising is a constant struggle. The event will support people within the EB community, and if the event is a success, they would like to repeat it each year. A supporter called Myra who suffers from a severe form of EB herself where her skin tears off when touched, her fingers are fused together, and is in extreme pain on a daily basis, would like to host the event personally and speak to the community about her condition. All money raised will go towards supporting and caring for people in Birmingham living with EB. This event will provide a support network for people in Birmingham living with EB – they will be introduced to other sufferers so they do not feel so isolated, and be able to receive ongoing support.
Where can people go to find out more about DEBRA?
For more information about DEBRA, please contact Aimee Stein, Fundraiser.