Coronation Street star backs Yorkshire campaigner's walk to raise awareness of Ehlers-Danlos syndromes

“For the first time my body made sense,” says 57-year-old Fran from Leeds. But trying to secure a formal diagnosis has been a challenge. Whilst she says a leading physio in the city has given her the nod for EDS, other private and NHS consultants have told her she doesn’t fit the criteria.

Fran claims she has been left “in a medical wilderness”, to try to manage symptoms on her own – and she’s not alone in feeling that way. The Ehlers-Danlos Support UK charity says it has been working for several years to try to improve NHS services around diagnosis and management for people with any type of EDS or hypermobility spectrum disorders (HSD).

But it says for people with hypermobile EDS (hEDS) or HSD, diagnosis and management has “relied on the personal interest, knowledge and commitment of a small number of clinicians and allied health professionals rather than on formally commissioned services”.

The charity is running a petition calling on the Government to provide dedicated funding for the diagnosis and treatment of the conditions. Fran is a passionate supporter. Earlier this year, she walked from Leeds Town Hall to Westminster to raise awareness of EDS and highlight the launch of the petition.

With 100,000 signatures needed by a November deadline to secure a debate in the House of Commons, Fran has just completed a second challenge, walking 200 miles coast-to-coast from Blackpool in the West to Cleethorpes in the East.

En-route, she stopped at eight Bannatyne Health Clubs, after the company backed her efforts. She is a member at the Bannatyne Health Club Cardigan Fields, Leeds, and uses the facilities there to help manage her symptoms. “It’s not been easy,” she says of the walk. But she’s been driven by a determination to raise awareness of EDS and champion a clear pathway of support for those suffering.

The self-employed music teacher walks with her ankles and pelvis strapped and using poles for support. She was joined for part of the route by Cherylee Houston, who plays Izzy Armstrong in ITV soap Coronation Street. Cherylee uses a wheelchair and has been honest about her difficulties living with the condition. "I could tell by Fran’s eyes how much this was taking out of her to do physically,” Cherylee says.

“I was so impressed with what she is doing knowing how painful EDS is and how resilient she is being. It’s a call for arms really. We all don’t want the next generations ahead of us to go through what we’ve done...You’re left to manage all by yourself. People aren’t getting the diagnoses and help they need.”

“Fran’s efforts to bring EDS into the consciousness of the public and the politicians who set healthcare funding is amazing,” she adds.

Fran was grateful to receive Cherylee’s backing. “She has been an amazing ambassador for everyone with EDS simply by being visible in the media and not shying away when talking about her own experiences of the illness. I hope that it makes the people in charge take notice and provide the care and support that so many people need – and deserve.”

In a response to the petition back in July, the Government said it recognised that people living with hEDS and HDS can face challenges with diagnosis and treatment, but said there were no plans for a nationally commissioned NHS diagnostic service for the conditions. It said clinicians, such as GPs and physiotherapists, “are being empowered to identify and diagnose hEDS and HSD”, whilst NHS England was exploring “improving access and personalised support for those with chronic pain” in the community.

It added that the Department for Health and Social Care had also been working with NHS England around addressing inequalities in musculoskeletal health and access to support services. “Given that most with hEDS and HSD report chronic pain attributable to the musculoskeletal system, their healthcare needs are similar,” it said.