A Lerwick woman who has lived with MS for almost four decades says her family and day-to-day life is “a million times better” after receiving specialist treatment in Mexico.
Jolene Masson says she is already seeing changes in her quality of life, as well as a boost mentally, physically and emotionally on the back of the pioneering procedures.
Some health experts have questioned the validity of the treatment, though Jolene believes it was well worth the trip.
She spent Christmas overseas with her partner Craig, undergoing hematopoietic stem cell transplantation (HSCT) – extracting cells from the body and blasting remaining ones with chemotherapy.
Since the age of seven Jolene has suffered from RRMS, a relapse-remitting form of the disease, suffering attacks which had led to the loss of power in her arms and legs and years of nerve damage.
Following months of research, she flew to Mexico in December, spending a month at a health clinic.
Three months of isolation followed until she has been able to build up her immune system, as well as travelling south for a course of drug infusions.
She feels she is starting to see the benefits and has enjoyed being able to go out walking and lose the feeling of “pins and needles” in her feet and legs.
“I feel more hopeful now. When you have a disability of any kind it impairs certain areas of your life. I couldn’t go out for a walk; if I wanted to even walk from one end of the street to the other it was an effort.
“Once I got my treatment I noticed a big difference. I’m certainly in a better place than I was.”
Jolene admits it is still early days and it could take a couple of years to see all the positives.
She described herself as a social person and though she coped well with the chemotherapy she said the isolation period was difficult.
“Because it’s a treatment that’s relatively new in treating MS patients you don’t know how you’re going to respond to the treatment.
“They say 95 per cent of people respond fine and five per cent are non-responders.
“I’m always saying to folk I’m doing really good and I just hope and pray, cross fingers, touch wood, it’s not a cure but hopefully that’s halted it.
“I’ve seen improvements and that’s given me a massive boost.
“Others haven’t seen improvements so they don’t know if it’s halted it or not. Seeing improvements is hopefully a sign it’s helped.”
Jolene says overall the treatment, follow-up care and the likes of travel expenses comes to about £60,000.
A Go Get Funding page was set up her by nieces, raising about £13,000 towards the cause.
She says she feels very fortunate to be able to afford the experimental treatment and hopes it can in future be provided on the NHS.
“I think if it was on the NHS everybody would go for it I would think,” said Jolene.
She is nearing the end of her infusions, travelling to Edinburgh next week for another round.
HSCT, she said was similar to the procedure used to treat blood cancer patients and “that’s been done for decades”.
“I get up in the morning and it’s fine,” she said.
“I was always getting up in the morning before and you were honestly thinking ‘here we go again’ and get through another day.”