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Chorister walks to raise awareness of Ehlers-Danlos syndrome

25 August 2023

Fran Heley (left) with Cherylee Houston

Fran Heley (left) with Cherylee Houston

A CHORISTER from West Yorkshire is walking 200 miles from Blackpool to Cleethorpes to raise awareness of Ehlers-Danlos syndromes, a complex group of genetic conditions that affect the body’s connective tissues.

It is the second 200-mile walk that Fran Heley has undertaken, after a walk from Leeds to Westminster in May. Ms Heley, who sings at St Oswald’s, Guiseley, in Yorkshire, is trying to garner the level of support needed to force a parliamentary debate on dedicated funding for the diagnosis and treatment of the condition in the NHS; on average, she says, it takes ten years to get a diagnosis.

Her move follows the Government’s response to a petition presented by the charity Ehlers-Danlos Support UK (EDS), in May: “There are no plans for a national service for diagnosis of hEDS [hypermobile EDS] and HSD [hypermobility spectrums disorder]. Our plans for musculoskeletal conditions will be outlined in the major conditions strategy.”

The petition has reached more than 18,000 signatures, but 100,000 are needed for a debate on a better NHS pathway to be considered.

Ms Heley, who suffers neurological aspects of EDS, left Blackpool on 13 August, and hopes to arrive in Cleethorpes on Sunday. She spoke to the Church Times last Friday, after a day spent crossing the Pennines. “It’s fortunately not been too hot, but the days are so long. My legs are pulverised today,” she said.

“Up until now, I’ve been walking solo, but today I’ve had somebody from church walking with me, and that’s made a massive difference.” She is supported by her husband, Stephan, who meets her at various points on the walk; and by the EDS UK co-ordinator for Yorkshire and Humberside, Lisa Backhouse, on a route that will take her towards Wakefield and then to Worksop, in Nottinghamshire, and finally Cleethorpes, in Lincolnshire.

Together, they make up the Pathway to Parliament team. She has received encouragement from Cherylee Houston, who plays the character Izzy Armstrong, in ITV1’s Coronation Street. The conditions can affect all parts of the body, and the actress has the hEDS. She has used a wheelchair since she was 23.

“She has been campaigning for a number of years; so she is just the celebrity we needed on board,” Ms Heley said. “My MP [Stuart Andrew] has also been in contact, and I think things are happening, but it might take a miracle to get the 100,000 signatures we need. If it gets people talking about the condition, that will help.” The petition runs until 2 November.

Her walk takes in eight of the Bannatyne Health Clubs, which are supporting the petition. “They have been absolutely superb; I can’t thank them enough for helping us promote this,” she said. The first of these visits, at the time of speaking, was to Cookridge Hall, in north Leeds.

She is recognisable on the walk by the EDS UK T-shirt she is wearing. “It’s a lot of miles each day. I get progressively more soaked or sweaty on the walks, but we fight on,” she concluded. “It’s a Herculean task.”

petition.parliament.uk/petitions/637313

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