A BRAVE young woman has spoken for the first time about the devastating impact a chronic illness has had on her life.

Joe-Anna McKay, 25, was diagnosed with Ehlers-Danlos Syndrome and hyper mobility spectrum disorder three years ago, but only after suffering agonising and constant pain which blighted her childhood and her teens.

As a young adult she grew increasingly isolated as she felt she wasn't believed by doctors, and ended up suffering from serious mental health problems.

University student Joe-Anna's struggles continued as she ended up in hospital and was diagnosed as bipolar.

Her mum Shelagh has been battling to raise awareness of EDS, with that fight chronicled in the Tele.

She shaved off her hair amid a series of fundraisers to highlight a condition which is both under-diagnosed and misunderstood.

She raised cash to help fund a major report with the Ehlers-Danlos Syndrome Support Group, the first of its kind, looking at the impact of the condition on young people like Joe-Anna.

Now both mum and daughter are offering hope to thousands of other sufferers.

Recalling the illness at its worst, Joe-Anna said: "I felt so lonely and isolated, like no-one believed me.

"I couldn't go on a night out with friends because I was tired after an hour and had to go home.

"My joints hurt all the time and the pain was agonising - it affected everything.

"It has been better in the last two years, especially since I was diagnosed.

"I think it's because finally I was believed.

"I went to doctors and everything was put down to hormones.

"The only person in the world who believed me and knew something wasn't right was my mum."

Shelagh, a musician and former teacher, began researching Joe-Anna's symptoms and as she learned more she took her daughter down to a specialist in London who finally diagnosed what was wrong.

She decided that more had to be done to help those still suffering in silence and turned to the Ehlers-Danlos Support UK charity for help.

Shelagh first shaved her hair and then when she turned 50 set herself three big challenges, swimming 50 lengths in 50 minutes, writing 50 songs and knitting 50 items.

The 52-year-old added: "I don't believe this is a rare condition, I think it is seriously misdiagnosed."

Joe-Anna made a significant contribution to the study, carried out by an independent researcher, which culminated in a series of recommendations to NHS bosses and politicians.

The study found that 'young people in Scotland living with EDS or pursuing a diagnosis are not believed and not helped and suffer a great deal of loss'.

The report says young females in particular have been repeatedly disbelieved, dismissed, ignored and passed over to other services.

It also uncovered a serious shortage of support for young people.

Joe-Anna is glad that the findings are out in the open and she is now looking to the future.

She said: "I am concentrating on my health, as I don't know if I would be ready to study again.

"I hope to work closely with young people through the support group and mentor them.

"I am very proud of what we have achieved."

Shelagh added: "It is thanks to the people of Inverclyde and the Greenock Telegraph for highlighting this, that we raised the money and got so far.

"Through highlighting this in the Tele, people living in Inverclyde were able to get in touch and get help as well."

Shelagh is now researching the link between EDS, physical pain and mental health problems.

She added: "I believe Joe-Anna's pain led to her mental health problems and there needs to be more research in to it.

"That is what I am now studying."

EDS UK has thanked Shelagh for putting the condition firmly in the spotlight.

They said: "The report makes several recommendations and EDS UK is now seeking funding to take some of these forward.

"We will also be sharing the report with key MSPs, NHS Scotland and other decision-makers in an attempt to improve the understanding of the impact of these challenging conditions and the lack of services for people with them."