Sophie's Marathon Journey!

Having been an EB Clinical Nurse Specialist for 3 years I have seen first hand how important the work is that DEBRA do for the young people i care for.

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

Epidermolysis Bullosa is a genetic skin disease and is caused by genetic defects in the proteins that hold the skin layers together. This means the skin layers are not adhered together and cause the skin to tear/shear and blister at the slightest knock or touch, in relation to every day activities.

There are 4 main types of EB, at its worst it can be fatal in early infancy. Some of the patients suffer with raw and chronic wounds all over their body, meaning they have to wear specialist dressings head to toe which can take upwards of 2-3 hours to change daily.

I am privileged in my role as EB CNS to work alongside DEBRA to support our patients with Epidermolysis Bullosa. The children we care of are some of the bravest and most courageous people i have had the pleasure of caring for in my career, they have taught me alot along the way!

I am not a seasoned runner by any stretch of the imagination, but i need a focus! So here i am attempting to run a marathon! I am driven to raise as much money as i can for DEBRA as i know first hand just how vital the support they offer is to our children and young people.

Any donations big or small will be gratefully received while i pound the streets!!!