A DEVOTED mum is set to shave off all her hair in support of her daughter who suffers from a rare and potentially life-threatening illness which has taken medics over 20 years to diagnose.

Greenock woman Shelagh McKay Jones is making the gesture to raise awareness of Ehlers-Danlos Syndrome and hyper-mobility spectrum disorder.

Her 22-year-old daughter Joe-Anna McKay, pictured inset centre, has suffered from agonising pain since childhood as a result of the connective tissue conditions and has ended up hospitalised with anxiety as a result.

After doctors failed to diagnose her illness, her family were forced to take Joe-Anna to see experts in London to find out what was wrong. 

Shelagh, 48, said: “If we had waited she would have been my age before she would even be diagnosed.

“That is a scary thought.

“There is no cure but there are treatments. It is very hard to get her condition diagnosed on the NHS.

“It is also massively misdiagnosed and under diagnosed because so many of the symptoms are similar to other illnesses.

“It has had such a massive impact on Joe-Anna’s life, but the symptoms are very similar to other illnesses.

“I want to raise awareness of it to try and help other people. I want to raise as much money as I can for support groups around the country who offer much needed help to young people.

“I want to get the message about the symptoms out there.”

After years of deteriorating ill health, Joe-Anna was diagnosed in June this year with Ehlers-Danlos Syndrome and hyper-mobility spectrum disorder at St John and St Elizabeth Hospital in London.

Shelagh added: “They just don’t have the specialist equipment to diagnose it here in Scotland.

“It is a genetic disorder which exists from birth with symptoms including fragile skin, loose joints, chronic pain, muscle fatigue, easy bruising, muscle pain and premature osteoarthritis.

“But it can also lead to heart and lung problems.”

Joe-Anna suffered many symptoms in childhood and into her teenage years.

She was plagued by fatigue and struggled during school, but against all the odds secured a place at the West of Scotland University, studying film-making and screen writing.

But it can also leave sufferers with a pre-determined disposition to anxiety and Joe-Anna’s health then deteriorated rapidly.

Shelagh added: “Joe-Anna has suffered badly from anxiety in the last two years. She had a couple of episodes and been admitted to hospital.

“She wants more people to know about Ehlers-Danlos Syndrome.”

Shelagh, a singer and songwriter, challenged friends and family to help her raise £1,000 for various charities and is now preparing to shave off her hair.

She added: “There are people who have offered to pay me the money not to do it but Joe-Anna is very proud of what we are doing together.”

The caring mum has organised a ‘Shelagh’s Shearing Head Shave’ charity night at Royal West of Scotland Amateur Boat Club on Saturday December 16 at 5pm, with free entry for wellwishers.

She has a long line up of musicians taking part in the event and any money raised will go to the Ehlers-Danlos Syndrome support groups.

The £1,000 raised as part of the charity challenge will go to Ehlers-Danlos Support UK, the NHS Greater Glasgow & Clyde, and the Esteem Patient Recovery Fund, which has supported Joe-Anna.

But she is also donating money to the IRH gastroenterology unit as a thank you for treatment given to another family member. 

To donate to the cause visit www.justgiving.com/fundraising/shelaghmckayjoneseds