Menu Close

Woman’s EDS Walk Leads To Meeting With MPs

Fran Heley outside 10 Downing Street

A Leeds woman who walked more than 200 miles from the west to east coast of England, visiting eight Bannatyne health clubs, to raise awareness of the little-known disease Ehlers-Danlos Syndrome (EDS), has handed over a petition to 10 Downing street.

Fran Heley, a member at Bannatyne Health Club Cardigan Fields Leeds, undertook the epic journey, starting on Blackpool beach and ending in Cleethorpes, to raise awareness of the disease and collect signatories for a 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.

The walk, undertaken with support from Bannatyne health clubs, and Coronation Street star Cherylee Houston who also lives with EDS, played a major role in helping the EDSUk charity collect 27,800 signatures.

This led to Fran and the EDSUK charity team meeting 24 MPs including members of the Health and Welfare select committee.

Fran lives with the connective tissue disorder which may affect around 250,000 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.

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 often include chronic pain, severe fatigue, easily dislocated joints and gastric orders. Even among family members the symptoms can be significantly different.

Fran Heley said: “The thing with EDS is that there is such little awareness around the illness. Sufferers 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.

“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 many years before getting the support that they need and deserve.

“I’d like to thank everyone who signed the petition and helped us in any way, and I hope that the MPs we met will take the issue seriously so future generations can be supported by the NHS, and treatment and maybe one day even a cure can be found.”

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 and how much it can impact the lives of those who suffer with symptoms.”

Optimized by Optimole