Leeds member to walk 200 miles to raise awareness of little known illness

Bannatyne Leeds member Fran Heley is to walk more than 200 miles from the west to east coast of England, visiting eight Bannatyne health clubs to raise awareness of a little-known disease and collect signatures for a vital petition.

Fran Heley, a member at Bannatyne Health Club Cardigan Fields Leeds, lives with connective tissue disorder Ehlers-Danlos Syndrome (EDS), which may affect around 1 in 500 people in the UK. She uses the facilities at the health club to maintain her strength and reduce the impact that EDS has on her.

The passionate campaigner is undertaking the epic journey, starting on Blackpool beach and ending in Cleethorpes, to raise awareness of the disease and collect signatories for her parliamentary petition in order to force MPs to consider the impact the illness has on those who live with it with a view to gaining access to additional medical support. Currently, EDS treatment receives no national funding and there is limited understanding of the condition among medical professionals, as well as members of the public.

Earlier this year, Fran undertook a similar expedition, walking from Leeds Town Hall to Westminster by herself over 18 days. As a result of her efforts, she has collected just over 13,000 signatories, but hopes to hit 100,000 to be considered for a debate in the House of Commons before the deadline in November.

EDS, and the related Hyper-mobility Spectrum Disorder (HSD), affects the connective tissue – the ‘glue’ which holds joints and organs in place. Symptoms vary among individuals, but chronic pain, severe fatigue, easily dislocated joints and gastric orders. Even among family members the symptoms can be significantly different.

Fran Heley said: “Everyone at Bannatyne Health Club Cardigan Fields has been really supportive of my efforts to raise awareness of Ehlers-Danlos Syndrome. The team there have helped me with my training so I can manage these massive walks and shared the petition with members, as well as their friends and family.

“The thing with EDS is that there is such little awareness around the illness. Suffers wait on average around 10 years before getting a diagnosis, and many medical professionals don’t seem to know about it, so the symptoms are often attributed to something else.

“If we can reach 100,000 signatures on our petition and secure a debate in Parliament, we will make a huge difference to the understanding of the difficulties of living with EDS. There is no dedicated funding currently because it is considered a rare illness, but it’s not, it’s just not diagnosed correctly. And we need to change that so that people aren’t suffering for a decade before getting the support that they need and deserve.”

Kevin Easley, general manager at Bannatyne Health Club Cardigan Fields Leeds, said: “I have been totally inspired by Fran’s commitment to putting EDS on the radar of the government and public. I didn’t know about the illness until I met her, and that’s part of the problem – not enough people know and understand what it is, how much it can impact the lives of those who suffer with symptoms.

“I’m pleased that the Bannatyne Group has been able to support her and I’m sure she will collect plenty more signatures on the road and at our sister clubs. We’ll be doing our best to try and get her over that 100,000 mark.”

To sign the petition ‘Provide dedicated funding for diagnosis/treatment of hypermobile EDS and HSD’ visit: https://petition.parliament.uk/petitions/637313