‘I’ll keep fighting. I just want to get my life back’

Lesley McGilvary, who has EDS - Ehelrs Danlos Syndrome (Andrew Cawley, Sunday Post)
Lesley McGilvary, who has EDS - Ehelrs Danlos Syndrome (Andrew Cawley, Sunday Post)

LESLEY McGilvary used to be an active member of the community. She was fit, had two jobs and was always busy.

But one day, everything changed.

Lesley, 51, was out walking when she was suddenly struck down by an excruciating headache.

The pain was so severe, it made her vomit and she struggled to make it back home.

That was three years ago – and it turned out to be the start of a long and heartbreaking journey.

She eventually discovered she had a rare condition, called a cerebrospinal fluid leak.

Affecting one in 50,000 people, it occurs when the fluid which cushions the brain and spine leaks out through a hole in its protective sac.

This results in a drop in pressure, so that the brain can no longer float in fluid. It effectively means her brain is sinking.

It’s the same condition suffered by George Clooney, which the actor claims was so painful it almost drove him to suicide. And for Lesley, from Ayr, it is coupled with a rare connective tissue disorder called Ehlers-Danlos Syndrome, which affects her skin, tendons, ligaments, blood vessels, internal organs and bones.

As a result of her diagnoses, mum-of-two Lesley is now housebound and struggles to stay upright for any longer than a few hours every day.

“From an hour or so after I get up, I just have an incredible headache that’s only relieved by me lying flat,” she explained.

“I have to lie down for an hour before I can do something as simple as make a cup of tea.

“And it also affects my vision, hearing, memory and concentration.

“It’s very frustrating because most people heal after a few months, but some just don’t recover.

“Life stopped for me three years ago – and I’m not getting any better.”

The symptoms meant the community support worker, who spent years working with homeless people and children with behavioural problems, had to give up her job.

Her lack of mobility means she can barely leave home and daughter Alix, 21, has had to give up college to become her full-time carer.

“I feel like I’ve lost who I am – and been robbed of years of my life,” said Lesley.

“All I want is to get my life back.

“It took a long time – and a lot of research on my part – to convince doctors I wasn’t suffering from a mental health issue, but a genuine rare condition.

“CSF leaks and EDS are so rare that there isn’t really much in the way of treatment in Scotland.

“At first, I felt relieved to get a diagnosis, but now I just feel completely let down as there is very little help available.”

Lesley and fellow CSF leak sufferers are campaigning for better treatment in Scotland.

She said: “It’s so frustrating to think that the technology is there but our doctors don’t have the training to spot CSF leaks. The likelihood of me being helped is extremely slim – but I’ll keep fighting as long as I’m able.”

Visit csfleak.info