Running the Virgin London Marathon 2014 in a Full Suit of Chain Mail Armour! 

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I will be running the Virgin London Marathon 2014 in a full suit of chain mail armour. I have chosen to raise money for the charity DebRA. This charity is close to my heart as my niece, Hannah, suffers with the crippling skin condition called epidermolysis bullosa (EB). There are around 5000 people in the UK who suffer with this rare skin condition.

DebRA is the national charity that supports individuals and their families affected by EB. By supporting this charity you will help fund pionerring research to find effective treatments and ultimately a cure for EB. DebRA is fundimental in providing an enhanced specialist EB Nursing Service, in partnership with the NHS, to deliver optimal healthcare to children and adults living with EB. This charity also provides social care support to help people live with dignity. This is a service parents and people with EB can call on to reach out for advice, advocacy in the face of red tape and emergency grants. They provide access to specially adapted holiday homes and opportunities for social interaction.

DebRA interconnects each of these areas to ensure a holistic approach to care from birth, for as long as it is needed.

What is EB?

Epidermolysis Bullosa (EB) is a group of genetic disorders that result in fragility of the skin and, in some cases, other internal membranes and organs. Blisters, open wounds and sores form as a result of the slightest touch, rub or trauma.

Certain types of EB can be fatal in infancy and others are severely life-limiting. We estimate that there more than 5,000 people with EB in the UK, and 500,000 worldwide.

EB may be inherited in either a dominant (usually one parent carries the gene for EB and is affected by the condition themselves) or a recessive form (where both parents carry the gene but are usually unaffected, so the birth of an affected child is totally unexpected).

EB can also arise through a new spontaneous mutation whereby neither parent carries EB yet the gene mutates spontaneously in either the sperm or the egg before conception.

In dominant EB, there is a 50% chance of passing the disorder to children: in recessive EB the chance is 25%.

Rarely, a severe form of EB can be “acquired” as the result of autoimmune disease, whereby the body develops antibodies to its own tissue proteins.

EB can be divided into 4 main types: Simplex, Dystrophic, Junctional and the recently classified Kindler Syndrome.

For further information on EB or DebRA please visit https://www.debra.org.uk/

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