A GREENOCK woman who has led the fight for sufferers of a chronic illness which can have devastating impacts on lives is setting up a support group in Inverclyde.

Mum Shelagh McKay Jones has campaigned for the Ehlers Danlos syndrome and hypermobility community for years.

She first spoke out in the Tele about the condition after it took her daughter 20 years to be diagnosed, after first having symtoms in her teens.

Shelagh, 55, has fundraised tirelesly for the cause and also carried out her own pioneering research into the link of chronic hypermobility conditions like Ehlers Danlos with anxiety.

Now Shelagh, who is a local musician, has trained as an area co-ordinator and is now setting up a support for those with Ehlers Danlos Syndrome or Hypermobility Spectrum Disorder.

Ehlers Danlos is a chronic condition and is often referred to a hidden disability, caused by problems with connective tissue which is stretched, leading to hypermobility. 

As a result there are a complex set of symptoms including long term pain, chronic fatigue, dizziness, palpitations and digestive disorders, but it can also lead to anxiety and depression caused by the constant pain.

Shelagh, who lives in Greenock, said: "When I first started raising awareness of Ehlers Danlos in the Tele there were so many people who got in touch with me. Since then I have felt a need to do more in Inverclyde.

"There are so many people with hypermobility as well, they go hand in hand and the impact is the same.

"I want to reach out to as many people as I can. I think it is important to have a support group here in Inverclyde to create a community of support.

"For people who suffer from the conditions, it can be hard to travel far away for meetings, you don't know how you will be feeling on the day. This support group is also for carers.

"I have looked long and hard into finding a venue and I think I have the right one in Greenock."

Previously Shelagh has shaved her hair to raise money for sufferers and has repeatedly raised awareness.

She used her own Open University studies to specialise in Ehlers Danlos and its links with anxiety.

Shelagh is looking for as many people as possible to get in touch and come along to the support group.

To find out more about the group email smckayjones@volunteer.ehlers-danlos.org