Now she wants her life back
because she had not yet been diagnosed with a disability.
In 2011, a doctor who had seen a similar case in England suggested Fiona may be suffering from SPS and, after further tests, she was finally diagnosed – three-and-a half years after first reporting her symptoms.
Since then, the only treatment which has helped ease her spasms is powerful diazepam and painkillers, which affect her ability to function properly day to day.
But, five years ago, Fiona became aware of treatment available at a hospital in Sheffield. Tests were carried out there and she was said to be an “ideal candidate” for the stem cell transplant – more commonly used to treat multiple sclerosis sufferers.
Fiona said: “It isn’t without risks. They use your own stem cells for the treatment. I would’ve wanted to have kids but the treatment also includes chemotherapy, which may put me into early menopause, but I have to do something.”
Fiona asked NHS Scotland for funding but was told that other options should be explored with a neurologist first.
She said: “Their argument is that it’s not fully proven and nobody in Scotland has had NHS funding for this yet.
“I struggle to see why they are denying people quality of life. That is what the NHS are meant to be there for.”
In the meantime, Fiona is preparing to endure an assessment for Personal Independence Payment because she is still incapable of working. She said: “It’s degrading and makes you feel worthless.”
Fiona’s mum Linda, 75, has now launched a crowdfunding bid in an attempt to find the money for treatment which will give Fiona “her life back”. In an emotional plea on the JustGiving page, which has so far raised about £1300, Linda said: “It’s heartbreaking. To see my daughter, who was once a hard worker, who had a thirst for living life to the full, deteriorate to being barely able to leave home on a ‘good day’ and think back to how she used to be, is devastating.
“To see her often in agonising pain and bed-ridden makes me feel completely helpless. There is however a cure...”
Linda added: “Anything you could provide to help me get my daughter back and give her a future would be very much appreciated indeed.”
NHS Highland said they were continuing to support Fiona but “it is the patient’s prerogative to seek private healthcare”.
●To help Fiona, visit www.justgiving. com/crowdfunding/linda-campbell-3
SOMETIMES referred to as Moersch-Woltman syndrome, it is a rare neurological disorder causing progressive muscle stiffness and repeated episodes of painful spasms.
The National Centre for Advancing Translational Sciences in the US say scientists don’t yet fully understand what causes it.
But research indicates that it is the result of an “abnormal autoimmune response in the brain and spinal cord”, which causes the immune system to mistakenly attack the body. Spasms can occur randomly.
The severity and progression of SPS varies from one person to another. If left untreated, it can progress to cause difficulty walking and significantly impact a person’s ability to perform routine, daily tasks.
SPS was first described in the medical literature by doctors Moersch and Woltman in 1956 as “stiff-man syndrome” but is now thought to predominantly affect women and, in rare cases, kids. Britain’s largest-ever warship, the 932ft aircraft carrier HMS Queen Elizabeth, has had a pub installed in time for her maiden voyage this month.