A Skye man, whose life “was turned upside down” by a diagnosis of Multiple Sclerosis, is set to undergo medical treatment in Mexico in a bid to secure a fighting chance in his battle with the debilitating condition.
James Coull, from Harlosh, plans to fly to Mexico in May to undergo Hematopoietic Stem Cell Transplantation – a chemotherapy treatment designed to help halt disease progression in neurologic autoimmune diseases, such as MS, for which there is no current cure.
The treatment is not available in the UK through the NHS, so currently James relies on Disease Modifying Therapy in the form of pills in a bid to reduce the frequency of MS relapses.
A fundraising campaign, to help meet the estimated cost of the £50,000 needed for the treatment, has been met with an incredible response – bringing in nearly £30,000 in under a fortnight.
Speaking to the Free Press James said he had been taken aback by the show of support.
“To get this much support in such a short space of time is phenomenal, but I am so grateful to each and every person who has offered help,” he added.
“It’s a leap of faith in a way, but one that I feel I have to take to give me the best chance against the condition.”
James, who is 44, had previously been busy, fit and active before he noticed a ‘weak and uncoordinated’ feeling in his legs while walking in March 2023.
When the feeling eased he thought little more of it until he attempted to take part in a dads’ race at a local school sports, and found that he was simply unable to run.
After a series of tests and examinations throughout that year he was diagnosed with Relapsing, Remitting Multiple Sclerosis in December 2023.
No two cases of MS are the same, but for James the condition has caused continuing weakness in his legs, and left him severely fatigued.
Though DMT medication can help, he anticipates that symptoms will remain chronic with a slow decline in function in a fluctuating pattern for the rest of his life.
“For my life it’s been a complete upheaval,” added James, a dad of two who is no longer working after spending all of his career employed in physical jobs outdoors – beginning with fishing before moving on to the Merchant Navy and then for the best part of 20 years as an offshore worker in oil and gas.
James said success from the treatment in Mexico would come if his body was to be spared the sense of fatigue.
He added: “I look at my body like a battery being charged up.
“People wake up in the morning and have 100 per cent charge, whereas I have maybe 20-30 per cent, and I have to ration that to get me through the day.
“I know going to Mexico will carry a degree of risk, but I feel that going to try to address things now gives me a greater chance of success than waiting until the MS has relapsed further.
“It’s not a decision I have made lightly and we have done a lot of research into the clinic and spoken to others who have undergone treatment there.
“The procedure is established, and you can get it in the UK, but not through the NHS.
“The cost can be hugely prohibitive, so every donation, no matter the amount, will bring me ever closer to regaining the quality of life I once enjoyed and it gives me the willpower to beat this disease.
“I remain optimistic that one day there will be a cure for MS, so that generations to come don’t have to suffer in the same way.”
The treatment in Mexico involves a stay of around 28 days at the clinic, and James will be accompanied by his mum when he makes the trip.
The clinic has performed more than 2500 HSCT procedures during more than 20 years, out of which over 600 have been for MS.
In MS the immune system mistakenly attacks the protective layer around nerves, called myelin. HSCT is a procedure that aims to reset the faulty immune system to stop this happening by partly or fully wiping out the immune system and then regrowing it using stem cells.
HSCT uses chemotherapy to remove the harmful immune cells and then rebuilds the immune system using a type of stem cell found in bone marrow.
National charity the MS Society says that clinical trials have shown that HSCT is able to reduce relapses – mainly for people with relapsing MS.
For some people their symptoms stabilise or get better, or their disability improves, although improvements don’t always last and there can be side effects.
Donate to James’s campaign by clicking on this link.
As well as to those who have donated online, James has also passed on his thanks to all who have made contributions in person or through family members.
Article by Keith MacKenzie