Roma woman tells of her ‘life-changing’ MS treatment
“THERE’S a 70 per cent chance you’re going to get a mum without MS for the first time.”
Those were the words Amanda Weyman-Jones told her daughter before they hopped on a plane, in a last ditch-attempt for Amanda to take her future back.
In January, Amanda and daughter Chloe travelled halfway across the globe to Moscow, Russia for a life changing and experimental treatment in hopes it would effectively stop her three decade battle with multiple sclerosis in its tracks.
The trip was made possible with the support from the Roma community who banded together to help Amanda raise $80,000 to pay for the treatment only available in the Russian capital.
And according to Amanda, she has already seen a massive improvement with her condition.
“I’m walking and I would say I have improved 70 per cent already, and it’s only expected to get better as time goes on,” the 58-year-old mother of six said.
“They say that the treatment gives you an 80 per cent (chance) of curing your MS and at the moment, I feel like I’m in that 80 per cent – I’m feeling really good about my chances.”
Amanda underwent an experimental procedure called Autologous haematopoietic stem cell transplant (AHSCT) treatment, which rebuilds the patient’s immune system.
Seven weeks on and Amanda says she feels like a “new person,” and has been walking around the football field everyday, which she states is a “miracle” as she couldn’t even walk to the field before the treatment.
Ever since returning to Roma from Russia in February, all she has wanted to do is shout from the rooftops that others living with MS can also have their lives changed.
“I heard about a man on a property in Blackall with MS and he’s young so I want him to know he doesn’t have to have this disease, you can get better,” Mrs Weyman-Jones said.
“This treatment gives you that infinity with people. It’s life saving stuff.”
Amanda’s brother Hayward and sister Diana were both diagnosed with MS too; Hayward died last year, and Diana is now in a wheelchair.
All too familiar with the devastating effects of MS, Amanda is determined to not become a burden on her loved ones.
Amanda who has Primary Progressive MS was given an Expanded Disability Status Scale (EDSS) score of 4.5 which notes a limited walking mobility to approximately 300m without aide prior to treatment. With no action taken, she would probably have continued to progress until she was wheelchair bound. The EDSS is scored zero to 10, with 10 marking a person has died from MS.
Now, with more improvements expected to continue in the next six to 12 months, Amanda is hopeful her quality of life will improve and once her immunity has built up, to continue working at the family-owned-and-run Overlander Motel.
“I will be forever grateful to Dr Frederinco, the brilliant medical team in Russia, Roma, its local businesses and the wider community for blessing me with a new life,” Amanda said.
“Through the generosity and support by all, I have realised how lucky I am to be surrounded by such a caring community.”
Amanda said she knew that while there is a long road ahead of her, every passing day she is more feeling more hopeful.
“I was told that recovery can be like a rollercoaster, so I will accept the bad days and make sure I remember the good,” she said.
“My walking is slowly getting safer and less hazardous to myself …. and to all other pedestrians. Every morning I wake up, knowing that every day’s a better day.
“I am a new person, it is just a miracle.”
Stats about MS
With MS Queensland aware of nearly 4000 people living with Multiple Sclerosis in Queensland and over 25,600 people in Australia living with the neurological condition.
Most people with MS in Australia experience their first symptoms between 20 and 40 years of age, with about three quarters of people living with MS, female.
MS is not considered a classic genetic disease in that there is not one single gene that causes the condition. Rather, there are more than 200 different known genetic factors which contribute to the risk of developing MS. It has been estimated that genes may account for around half of the risk for MS, and those with a family history of MS are at greater risk than the general population. Even so, the majority of people with a family member with MS will not develop the disease – so genes on their own are not enough.
MS is caused by a complex interaction between a person’s genetics and environment factors.
Autologous haematopoietic stem cell transplant (AHSCT) is an immunosuppressive chemotherapy treatment combined with reinfusion of blood stem cells to help rebuild the immune system.
AHSCT has been used for decades for the treatment of blood cancers. However in the past ten or so years a number of international observational studies of several hundred patients have been published with some patients being followed for five to eight years.
The treatment consisted of four days of stimulation before the stem cells were collected and then Amanda was pumped full of high dose chemotherapy.
Amanda then had a rest day, and on January 29, her harvested stem cells were returned to her MS ravaged body, signalling the rebirth of her immune system with no memory of MS.
After that she was given daily steroid infusions and was put into isolation for six nights before one final dose of chemotherapy.
Response from MS Queensland about the treatment
CEO of MS Queensland Zane Ali said MS Queensland and MS Research Australia are continuing to support Australian research in the use of AHSCT to treat multiple sclerosis.
“Rigorous evidence for the efficacy and safety of AHSCT in relation to other MS therapies, and the most appropriate circumstances for its use, is required for Australian hospitals and clinicians to provide this intervention with equity and with greater confidence in the potential outcomes,” he said.
“Australian hospitals and doctors are likely to recommend AHSCT as a possible treatment only if the other approved MS therapies are not working for an individual with MS or cannot be used in an individual for other reasons.”
Despite Amanda’s MRI revealing her Central Nervous System was so progressed (with 35 lesions or more on the spine), she met the criteria for the treatment because of her mobility.
“You have to be at a very healthy besides having MS, patients are tested from head to toe when they first arrive in hospital to ensure that they don’t have any cancers or illnesses that could effect the viability of the treatment,” said daughter Chloe.
“The doctor was surprised after he saw how mobile mum still was considering the damage that he saw in her brain.
“People aren’t accepted all of the time, some are told before they go and some are only told after all of the testing is completed in Moscow, then they are then sent home.” International studies also suggest AHSCT does not halt or reverse progressive forms of the disease, and is therefore unlikely that
AHSCT would be recommended as a treatment for patients with secondary progressive or primary progressive MS.”
Currently the treatment is provided in Australia through two observational clinical trials, at St Vincent’s, Sydney and Austin Health, Melbourne and by a small number of other centres on a case-by-case basis.
“These centres have strict eligibility requirements that have been set by the hospital ethics committees and may only apply to limited numbers of patients with MS,” Mr Ali said.
“It is for this reason patients need to be referred to these centres by a neurologist, who can provide a detailed clinical history and MRI findings,” Mr Ali said.
Mr Ali said that data from the large European Bone Marrow Transplant Registry suggests that in approximately 55 per cent of people with MS, treated with a range of different chemotherapy regimens, at three years of follow-up, inflammatory disease is halted with no evidence during the follow-up period of relapses, active brain lesions or disability progression.
“After five years approximately 45 per cent of people remain progression free.
This case series included patients with both relapsing remitting and progressive disease,” he said.
“Other smaller studies have shown similar results, with remission of disease seen in these studies in at least 63 per cent of patients followed for a minimum of three years.
“Most studies also show that the risk of disease activity returning gradually increases over longer periods of follow-up.”
Mr Ali said in some but not all, of the people with MS who respond to AHSCT, some reversal of disability has been noted in some studies.
“Other patients may continue to experience disease activity and disability progression (worsening) despite treatment with AHSCT,” he said.
“In people with progressive forms of MS or relapsing remitting MS of longer duration, the benefits of the procedure have been much less clear and accumulation of disability usually continues.”
Amanda said they chose Moscow for the treatment because despite other countries offering the experimental procedure, after thorough research they found Russia had the highest rate of treatment success.
“They accept advanced progressive MS where most of the other clinics offering it only treat relapsing remitting MS,” she said.
“I was still on my feet (only just) but people went over in wheelchairs, walkers, walking sticks and many were older than me.”
For Chloe, who is training to become a nurse and who spent every spare moment researching AHSCT treatment said while they mostly compared the options available in Mexico and Russia, Russia stood out to them because it was cheaper and they had more experience.
“One of the major influencing factors was that in Mexico patients stayed in a complex with they carer and in Russia patients stayed in a hospital, so we felt more reassured knowing that mum would have 24 hour care provided to her at the touch of a buzzer,” she said.
Great lengths of a loving daughter
Although Amanda has lived with MS for 34 years, she feels like she is one of the lucky ones.
“None of this would have been possible without Chloe. Her drive and determination surprises me every day,” she said.
“Researching, booking, fundraising and organising the whole trip, proves to me that I am the luckiest mum on earth.”
Chloe was the driving force behind the push for treatment and the GoFundMe campaign which raised over half the $80,000 goal was with her mum every step of the journey.
“I have found spending a month in Russia very interesting, the first couple of weeks for easy, but after that I just wanted to come home to Australia,” the 19-year-old said.
“Every day I would go and visit Mum in the morning and stay there with her until dark and then head on back to the hotel, I basically just did that every day.
“I made some great friends with some other patients carers and so often we would catch up at the end of the day to recuperate and support each other.”
Although the month spent away from her loved ones began to take its toll, Chloe has high hopes for the future.
“It was very draining being over there, I felt like I wasn’t doing much but I was just always so tired,” she said.
“It’s amazing to see how quickly mum is healing after the treatment, but it will take some time to see what the true outcome for her is going to be.
“In the end, we don’t know what the future holds for mum and her MS, we are just thinking positively and hope that we see improvements over the next 12 months.
“We feel very lucky that we had the opportunity to go over and are now advocating for other people to have the treatment as well.”