Two Scottish ladies residing with a number of sclerosis for virtually 20 years have travelled to Russia for what they hope can be life-changing therapy.
Jill McLaren and Michele Murray had deliberate earlier journeys to a non-public Moscow clinic however they had been cancelled due to Covid travel restrictions.
Both ladies had to protect themselves from the virus.
They have now been granted visas by the Russian authorities and can have stem cell transplants over the approaching weeks.
Haematopoietic stem cell transplantation (HSCT) is an aggressive process that carries dangers.
The MS Society Scotland mentioned that whereas “some people see life-changing results” the therapy was not efficient for all forms of the illness and people contemplating it ought to talk about it rigorously with their GP or neurologist.
Afterwards, the ladies can be extraordinarily susceptible to severe infections and will take greater than a yr to get well.
‘Safest time to travel’
Jill, a former radio presenter and journalist from Edinburgh, mentioned: “I think it’s probably the safest time to go because everybody is taking so much more care. I know that probably sounds stupid, but it is probably the best time to travel, and come back.
“I’m not nervous about going, I’m actually excited. I am unable to wait.”
The women contacted each other through social media when they discovered they were going to be in the clinic at the same time, and decided to travel together.
Michele is from Tain in the Highlands and worked as a clerical assistant until ill-health forced her to give up her job.
She said: “I really feel that it is the cleanest and most secure time to travel as a result of there will not be as many individuals on the airplane and every little thing is sterilised. To me it is a no brainer to do it now.
“It’s just great going with Jill. Both our husbands can relax knowing we’re going to have each other. That makes all the difference. We don’t have to travel on our own.”
Multiple sclerosis (MS) is a neurological situation which impacts the mind and spinal twine and might lead to severe incapacity.
Instead of combating off an infection, the immune system assaults the nerves which management completely different elements of the physique.
More than 15,000 folks have MS in Scotland, the next prevalence than most different international locations on the planet.
Jill was identified with the situation 18 years in the past, Michele a yr later.
Both ladies are married with youngsters and concern their well being is deteriorating to the extent that they may quickly turn into confined to a wheelchair.
They had been a part of the group that had to protect in Scotland on the peak of the pandemic
They are actually paying tens of 1000’s of kilos to endure HSCT, an intense chemotherapy therapy which goals to cease the injury brought on by MS by eradicating dangerous immune cells.
The individual’s personal stem cells are then used to regrow and “reboot” the immune system.
More than 130 sufferers have acquired HSCT from the NHS in England, however lots of extra have paid for personal therapy in international clinics.
Last yr, it was advisable for use by the NHS in Scotland however thus far it has not been given to any sufferers north of the border.
‘Starting from scratch’
Michele and Jill say they do not meet the present NHS standards for the therapy in order that they’re following within the footsteps of 32 Scots who’ve travelled overseas for HSCT in recent times.
Jill mentioned: “It’s basically pressing control alt delete on my immune system. It’s starting again from scratch.
“This is the one factor that is accessible that may cease the factor in its tracks.
“The criteria that you have to fall into to get it on the NHS in Scotland is so, so, so narrow that I will never fit into it. For one thing, I’ve had the disease too long. I don’t have the luxury of waiting until it does become available.
“People inform me you are courageous going to do that, however it’s not courageous, I’m determined.”
Michele added: “You simply really feel it is getting worse and worse and also you’re deteriorating. You have to attempt to discover one thing that is going to assist.
“You need to do it to know if it’s going to work. You don’t have the option not to try.”
The Scottish HSCT community is working to elevate consciousness of the therapy for folks residing in Scotland.
A spokeswoman mentioned: “Patients continue to travel abroad to receive HSCT for multiple sclerosis as, for many, there are no other treatment options in Scotland.
“The determination to make HSCT accessible on NHS Scotland is a good step ahead. Although restrictive standards stay, this recognises the actual and tangible advantages of HSCT for folks dealing with the consequences of MS each day.”
Morna Simpkins, director of MS Society Scotland, said: “Last yr’s determination from the Scottish Health Technologies Group (SHTG) to suggest HSCT for consideration within the therapy of MS was welcome information and will assist in the event of a transparent pathway, for individuals who may doubtlessly profit, to entry it.
“We will continue to push to ensure that this decision leads to real change for people with MS by continuing to engage with NHS Scotland and other groups to offer the treatments, including HSCT, which are right for them.”