With so many charities around many of them don’t get the attention they need to keep the charity going. One particular charity I would like to help raise awareness for is DEBRA.
DEBRA raises money for Epidermolysis Bullosa (EB). EB is a very rare and hereditary genetic condition. It causes blistering/shearing of skin and internal linings resulting in severe pain and discomfort as well as lifelong disability. Even the slightest knock or rub can cause the skin to blister. Often parents do not know that they are carriers and will have no prior warning that the child will be affected until birth.
1 in 227 people carry the defective gene which causes EB and 1 in 17,000 live births will have a form of EB. There are currently around 5,000 people in the UK who are living with EB and around 500,000 worldwide.
There are 3 major types of EB: Simplex (occurs in 70% of cases), Dystrophic (25% of cases) and Junctional (5% of cases). In its most severe cases, EB can cause infant fatalities and can also cause aggressive skin cancer in young adults. In recent years there has been considerable progress made in understanding EB and identifying the genes which cause it. However, there is currently no cure or effective treatment for EB.
DEBRA aims to raise money to help support families who have a child with EB and to help with research towards a cure/effective treatment for those who are suffering with EB.
DEBRA’s current research priorities are:
- Work towards the development of gene therapy.
- Understand the nature of cancer in dystrophic EB.
- Understand the nature of wound healing in EB.
- Improve the management of EB through clinical research.
How can your money help?
- £15 – provides 5 babies with special mittens to prevent them tearing their own skin when they scratch.
- £25 – Pay for 1 hour of research to bring us closer to finding an effective treatment for EB.
- £50 – Fund 2 additional home visits by the EB team. Providing care at home is critical for those who find it difficult, or impossible, to travel.
- £100 – Pay for an essential changing unit to make it practical and efficient for carers to reach the many different types of dressings and creams which may be required during the frequent and often lengthy dressings and nappy changes.
- £300 – A family could enjoy a week’s holiday together in one of DEBRA’s specially adapted holiday homes. Travelling can be very difficult for people with EB, but DEBRA’s three holiday homes are specially designed and equipped for people with EB. It could be the family’s first holiday for years and provides a well-deserved break for all the family.
For more information and real life stories of people living with EB, please visit the DEBRA Charity’s website
Words: Katie Orchard
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