Heathers London Marathon 2025

My brother and I both have EB (epidermolysis bullosa). This is a rare genetic condition that causes painful skin blistering and tearing all over the body. Whilst our symptoms are getting worse as we get older, we are both extremely lucky. Some people will have life limiting or fatal outcomes from EB.

I am attempting(!) to run the London Marathon to raise money for DEBRA, the EB charity. The money will help DEBRA to support people living with EB, families needing additional support, whether that be physical, emotional or financial; giving them time away to create special memories when time might be limited. It will also go towards improving research and potential treatments, so that others don’t have to have this horrible condition - and those with the most serious types of EB have far better outcomes.

This is going to be one of the hardest things I have ever done - I’m not a runner! My skin won’t hold up past a few miles, however knowing why I am running will keep me going. Recovering from the marathon will be long and painful, but this is nothing in comparison to those with more severe forms of EB, who live like this daily. 

Thank you for your support and giving what you can

Heather x