Daily Record Jan 25, 2016 By David Taylor
Multiple sclerosis patient Lucy Clarke is the first Scot to successfully have the radical stem cell treatment that’s being hailed as “miraculous” by experts. Medics are now hopeful that it could eradicate the degenerative neurological condition.
Lucy, from Inverness, had to raise £40,000 for treatment in Moscow as she didn’t qualify for a trial in the UK. But now she’s able to live a more pain-free life and can jump about and enjoy active play with son Theo, five.
The 39-year-old said: “The main aim was to stop progression the of MS. “The fact I am already seeing small changes is so positive and each week and month there are more. “All the small changes will add up to bigger changes. “I feel more active now. I still walk with a stick but I’m swimming again and I’m cycling on my trike.”
There is hope the treatment could be rolled out for the UK’s 100,000 MS sufferers – including 10,000 in Scotland.
Doctors at the Royal Hallamshire Hospital in Sheffield last week hailed early results of a trial involving about 20 patients.
The treatment uses chemotherapy to destroy the patient’s immune system, which is rebuilt using stem cells harvested earlier from the patient’s blood by an autologous haematopoietic stem cell transplant (HSCT).
This is not a word I would use lightly.” Acupuncturist Lucy, who suffers from secondary progressive MS, found out about HSCT from her dad who had seen a documentary on it. But she did not meet the criteria for the Sheffield study as it was for patients with relapsing remitting MS.
She discovered she could get the treatment in Moscow and started a campaign to raise £40,000, telling pals: “I am committed to do whatever I can to overcome this disease.”
Lucy, who is married to Dan, 44, was told the waiting list was three years but she got a late cancellation and her treatment at Moscow’s Prigov Centre started on her birthday last May. She lost her hair and had extreme fatigue but since the HSCT, she no longer suffers pain or cramp in her legs on waking up, she can climb stairs more easily and has more energy.
Most days, she has little or no numbness and tingling in arms, hands, legs and feet. She doesn’t slur her words and a tremor in her left hand is gone. Lucy is building her strength using physiotherapy and hopes to eventually be able to ditch her walking sticks and doctors in Moscow told her that her condition could improve the most between 24 and 36 months after the treatment.
But while the treatment has made a big impact on patients’ lives, John Snowden, consultant haematologist at Royal Hallamshire, urged caution. He said trial patients would be monitored for decades and added: “Time will tell whether it is a cure or not.”
However, Lucy is realistic about the future. She said: “I don’t want to mislead people that everything is rosy and life is easy. I still get difficult days. “Getting back to health from the effects of chemotherapy alone takes time and rest. This, plus years of damage MS caused my body and nerves, means recovery will not happen overnight.
“HSCT is not a miracle cure. My aim’s always been to halt progression of the disease. Anything over and above I regard as an added bonus.
“When I compare how things are now to this time last year, I’m thrilled. “Not only have I not deteriorated, I am able to do things I haven’t been able to do in a very long time – things I thought I wouldn’t be able to do again. “HSCT was definitely the best treatment choice for me.”