I'm running the London Marathon on 22 April 2012 for DebRA.

DebRA is the national charity working for people with the genetic skin condition Epidermolysis Bullosa (EB). EB is a progressive, debilitating and life-threatening condition.

Known as the "butterfly disease", sufferers are missing a vital protein which holds the skin together, meaning their skin is incredibly fragile. It blisters and tears at the slightest touch, or even spontaneously. This includes external and internal skin linings such as the mouth, oesophagus and eyes.

I first found out about EB through 9-year old Sohana, who suffers from Recessive Dystophic EB (RDEB), the most severe form. She is almost completely covered in dressings in an attempt to reduce permanent damage. Sohana has to endure 2 hour long dressing checks twice a day, in which her mother lances blisters and dresses new wounds. Despite this, Sohana faces her condition with immense courage and a smile on her face.

There is currently no cure for RDEB, but DebRA hopes, through extensive research, to find a cure in stem cell based treatment. 

I hope you will donate generously to this very worthy cause, which should ultimately help to improve the lives of people like Sohana, who has to endure constant daily pain and suffering. For more information see http://www.debra.org.uk/

Annabelle