Kirsty and Dad's Fundraising Page

DEBRA is the national charity supporting those directly affected by Epidermolysis Bullosa (EB) as well as their families and carers.

EB is a excruciating, genetic, rare skin condition, affecting approximately 5000 babies, children and adults in the UK. With skin as fragile as a butterfly’s wings, it’s often referred to as ‘Butterfly Skin’. EB causes the skin to tear or blister at the slightest touch, leaving incredibly painful open wounds. It can affect the hands and feet only or in the most severe cases any part of the body, including blistering on the eyes and internal organs. People living with EB live in constant debilitating pain and in severe cases it can be fatal. The current standard of care includes daily wound care, pain management, and protective bandaging, which can take over 3 hours to do.

I am running the London Landmarks Half Marathon with my dad to raise awareness of this condition as well as raise money to fund for research for treatments and a cure to help people with EB live a life free of pain.

“When I was sixteen, I started developing severe blistering in my throat. Swallowing food can feel like eating razor blades.” - a quote from a person with EB.

Thank you millions for your donation.