My Story

DEBRA is a national charity and patient support organisation for people living with the rare, extremely painful, genetic skin blistering condition, Epidermolysis Bullosa (EB) also known as ‘Butterfly Skin’. 

EB causes the skin to become very fragile and tear or blister at the slightest touch. EB can be life limiting and at its worst fatal. Children with EB will often have to wear specialist dressings from head to toe. Dressing changes can take up to 3 hours to complete and can be extremely painful. There is no cure and so management consists of strong pain relief and symptom management. 

Take a look at www.Debra.org.uk for more information

Although I have never run a marathon before, I have set myself a very ambitious target of 3 hours. I am currently a long way off that, however I will be making some lifestyle changes, sticking to a strict training routine and keeping everyone updated. I hope to raise £2,500 for Debra in the process, this extraordinary amount will prove life changing for people of all ages living with Epidermolysis Bullosa. The money raised will go towards providing grants and vital support for people living with EB. One day we hope to find a cure for this cruel and debilitating skin disease. Who knows, the amount we raise together may even be the difference to find that cure for our butterfly community 🦋