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St Oswald's Guisley parishioner walks to Parliament to raise funds and awareness

First published on: 12th April 2023

A parishioner from one of our Leeds area churches is walking a ‘Pathway to Parliament’ to raise funds and awareness for a charity supporting those with Ehlers-Danlos Syndrome.

Fran Heley currently sings in the choir of St Oswald’s church in Guiseley.

Originally from London, music teacher Fran moved to Yorkshire 30 years ago and has never looked back.

Starting on Sunday May 21 Fran will be undertaking a walk from Leeds Town Hall to Parliament in aid of Ehlers-Danlos Support UK.

Ehlers-Danlos Syndrome is a genetic condition that affects the connective tissue.

The most common type of EDS involves hypermobility of the joints, but it can affect any part of the body, and lead to multiple and complex health issues which are difficult to treat.

According to EDS UK, it takes on average 10 years to get a diagnosis.

EDS UK offers advice and promotes research into the condition.

Fran said: “Four years into my journey and I am still struggling to get a formal diagnosis for EDS.

“My experience highlights the need for more research into the diagnostic process for diagnosing the condition.

“The current criteria focuses on the hypermobility of five specific joints, yet there are 300 joints in the body.

“My hypermobility is elsewhere, but has had a significant impact on my spine.

“Unfortunately, these joints do not count!

“There are also other signs, but these are quite often overlooked.

“Consequently, I and many others are left in a medical wilderness.

“This has had a profound impact on my life.

“I have had to stop playing the oboe and the active life that I once led is now diminishing.

“Joining the choir at St. Oswald’s has been one of the best things that I have done.

“It has taken a lot of soul searching, but I no longer feel angry about my situation, and now have a greater sense of connection through the church.

“This walk is undoubtedly daunting, but I also grateful for having the opportunity to try and help the EDS community.”

Fran has set up a JustGiving page, which can be found here.

Fran has also set up a Facebook page called ‘Pathway to Parliament’ where you can follow her progress.

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