CAMPAIGNERS are launching a charity to raise awareness of a rare spinal disorder which led former television presenter Michelle Watt to take her own life.
The 38-year-old daughter of former Scottish boxing champion, Jim Watt, had been left depressed and in excruciating pain following spinal surgery.
The lumbar puncture operation is believed to have resulted in a cerebral spinal fluid (CSF) leak, a chronic condition that leaves sufferers in agony with loss of sight, hearing and numbness.
The fluid surrounds the brain so that it "floats" inside the skull. A CSF leak causes the brain to sink.
George Clooney previously suffered a CSF leak following an injury on a film set and which he said left him feeling suicidal.
Now Scots with the condition are bidding to launch a charity which will raise awareness and fundraise for sufferers to undergo life-changing surgery in the United States.
Although the equipment in available in Britain, NHS doctors lack the expertise to find and fix the leaks.
David Baldwin, a CSF sufferer from Ross-shire, is currently in the US where he is due to undergo his second surgery at Cedars Sinai in Los Angeles, where he is being treated by world-renowned CSF expert and Clooney surgeon, Wouter Schievink.
His family raised £70,000 for the first operation, plus travel and accommodation costs, but face escalating medical bills since the initial surgery was less successful than hoped.
Fellow CSF sufferer Lesley McGilvary, 49, from Ayr, said they will launch the CSF charity when Mr Baldwin returns to Scotland in August.
Ms McGilvary, a community support worker who spent years working with homeless people and children with behavioural problems, has unable to leave the house on her own or work for the past year since becoming unwell.
She said: "It's so frustrating to think that the technology is there but our doctors don't have the training to read the scans and locate CSF leaks. The likelihood of me being helped here is extremely slim.
"It was heartbreaking to read about Michelle Watt and I feel we have to raise awareness to help other leakers who are housebound and disabled across the UK."
For more information visit www.csfleak.info.
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