Fran Heley

Pathway to Parliament in aid of EDS UK

Fundraising for Ehlers-Danlos Support UK
raised of £5,500 target
by 176 supporters
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Ehlers-Danlos Support UK

Verified by JustGiving

RCN 1157027
We educate, inform and raise awareness to support those living with Ehlers-Danlos


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EDS UK have now gone live with a petition. Please go to the EDS UK website to sign a petition. Every signature counts. Thank you.

Why am I walking in aid of EDS UK?

I have seen countless medical professionals throughout my life for chronic pain, and have never been given a satisfactory answer to what was wrong. Quite by chance, I stumbled across an article on Ehlers- Danlos Syndrome, and for the first time my body made sense. A connective tissue disorder. I thought that finally I had a way forward.

Unfortunately, trying to get a formal diagnosis for EDS has thus far been elusive. Although I have been given the nod for the condition by a leading EDS physio in Leeds, I have been repeatedly told by private and NHS consultants that I don't fit the criteria for EDS. The main diagnostic tool focuses on the hypermobility of specific joints-although other factors are at play. In my experience, no one mentions the other factors, and as my hypermobility is predominantly affecting my lower limbs, they apparently don't count. This leaves me in a medical wilderness. 

I soon became aware of how many other people are struggling to get diagnosed with EDS. I'm told that it's a rare condition- it's not. It's rarely diagnosed. If someone manages to get a formal diagnosis, then there is no clear pathway of support, and often people are left to cope with complex and serious medical conditions on their own. In my case, I have spent the last 4 years battling to find anyone who can help me with a number of conditions affecting my spine.  

The EDS UK support charity is struggling financially. EDS potentially affects a significant number of the population and many turn to the charity for advice and support. They also fund research and promote awareness within the medical profession. It is absolutely vital that this charity keeps going. The current situation is dire. Nothing will improve if the charity don't have the funds to try and bring about change. 

This is why I walk.


If you are wondering about the zebra, it is the symbol for EDS. It serves as a reminder that to the medical profession that if you hear hooves, don't always expect the obvious. I am walking in May, as it's EDS awareness during that month, and this is one of the many dazzle walks taking place around the UK to raise awareness and fund for EDS UK.

Thank you to Karen Gourlay for giving me permission to use this amazing photograph of the zebra. PhotoCredit@KarenGourlayPhotography

Update- the walk to London is now done. Thankyou to all who supported me. Now the focus is on the petition-and a new walk. Pathway to Parliament on the Bannatyne Trail.



About the charity

Ehlers-Danlos Support UK

Verified by JustGiving

RCN 1157027
Ehlers-Danlos Support UK improves quality of life for people living with the Ehlers-Danlos syndromes (EDS). We work across the UK to support, advise and inform those living with the condition and the medical professionals working with them.

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