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Историята на Хедър за Лондонския маратон за EB

by Heather Crowley, 4th март 2025 (Последна актуализация на 5 март 2025 г.)
Хедър и Том, братя и сестри, които живеят с EB, увити в удобни зимни якета, се прегръщат и споделят сърдечна усмивка.

My brother, Tom, and I both live with епидермолиза булоза симплекс (EBS). It has taken until our mid and late 30s to get a diagnosis. And whilst our symptoms are getting worse as we get older, we are both extremely lucky. We are acutely aware that others living with different types of EB aren’t as lucky and will have life limiting or fatal outcomes.

I’ve wanted to run the London Marathon all my life and have watched it every single year for as long as I can remember. It’s such an iconic event to be a part of! I’m not a runner, and as my EB symptoms have worsened with age, I didn’t think it was something that I’d be able to achieve.

My brother took part in the Brighton Marathon in 2024 for DEBRA despite being in complete agony from mile four. He ended up spending several hours in the medical tent. Seeing what he could achieve despite his EB was all the encouragement I needed to get to the start line!

Tom, who lives with EB simplex, running the Brighton Marathon. Tom wears a DEBRA running vest. Tom, who lives with EB simplex, running the Brighton Marathon. Tom wears a DEBRA running vest.
Tom Goddard, who lives with EB simplex, running the Brighton Marathon.

My EB impact

Selfie of Heather Crowley wearing a hydration backpack and a DEBRA running vest.I’m running the Лондонски маратон and raising money for DEBRA to help improve outcomes for those with EB who aren’t as fortunate with their symptoms. I consider myself lucky to even be able to sign up for the event!

The money raised will help to support others living with EB in different ways – whether that be emotionally, financially or physically. It could also give families the opportunity to have a break away in one of DEBRA’s holiday homes to create lifelong memories, where time might be limited.

I also hope the money can be used towards EB изследвания, so that those living with more severe types of EB, have hope for a brighter future.

Ако мислиш за fundraising for DEBRA, you don’t need to give it a second thought. They are a fantastic charity that help people in so many invaluable ways. EB is such a complex condition that not only affects the individual, but the whole family. Treatments for all types of EB are in development, but funds are needed to continue this vital work.

In the meantime, families continue to need support every day, which DEBRA do wholeheartedly through their Екип за поддръжка на общността на EB.

Being able to raise money for DEBRA as someone with EB means the world; it truly is a cause close to my heart. I also wanted to show what us ‘EB-ers’ can achieve.

We are a mighty strong bunch!