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Posted: 2018-12-26 13:05:00
AHSCT is a gruelling process for any patient.

AHSCT is a gruelling process for any patient.Credit:MS Research Australia

Amid the emotional turbulence, she has pinned her hopes on an emerging therapy called autologous haematopoietic stem cell transplantation (AHSCT), which aims to "reboot" the body's immune system without the presence of the cells that attack it.

An Australian trial - run by St Vincent's Hospital in Sydney involving 35 patients with relapsing-remitting MS (RRMS), which Ms Berini has, and secondary progressive MS - found 60 per cent showed no evidence of disease activity after three years and more than half of the remainder showed an improvement in their disability scores.

Led by Dr John Moore, the trial confirmed "the important role of AHSCT as a therapeutic option for patients with RRMS".

The observational study, published in the BMJ’s latest Journal of Neurology, Neurosurgery and Psychiatry, concluded the results "provide further evidence that AHSCT … is a highly efficacious therapy for patients with MS even after failing multiple therapies such as natalizumab".

AHSCT involves extracting stem cells from blood or bone marrow, undergoing heavy chemotherapy to destroy the MS-affected autoimmune system, leaving the patient incredibly vulnerable, before reintroducing the stem cells to restore the body's defences.

It's not easy, nor fun - the process can feel like dying and a lot of patients have – and Dr Moore cautions "HSCT is still reserved for patients that have failed other therapies and is not a first-line therapy for MS".

MS Research Australia chief executive Matthew Miles said the study indicated HSCT was heading in the right direction as medical professionals became more experienced, but there was still a long way to go.

"It's [a long way off], but [these results are] greatly encouraging and it's progressing in the right way - this is exciting, this is exciting in a number of ways," Dr Miles said.

"At one stage [in the treatment's history] some of the results showed about 5 to 7 per cent of people dying because of the treatment. That seems to have really changed now and I think we can see that with [the latest] results."

Ashley Berini is in and out of hospital as she experiences relapses.

Ashley Berini is in and out of hospital as she experiences relapses.

Dr Miles said that, despite all of the positivity, HSCT was not a cure in the traditional sense and stressed it would not help long-term sufferers reverse the damage MS had already done.

"There's a small portion of MS sufferers that may really benefit from this treatment - that's a great thing, that's another string to our bow," he said.

Ms Berini has been dreaming of undergoing AHSCT since a friend underwent the procedure for MS in a trial four years ago.

She said that seeing her friend’s symptoms was "kind of like looking at myself", but doctors warn against comparing symptoms with others and drawing conclusions.

As Ms Berini is not yet an Australian citizen, she does not have the option of getting into an AHSCT trial. She believes she is running out of time as she enters her mid-30s.

She has raised about half of the estimated $100,000 to $120,000 to have AHSCT privately overseas - which she believes to be the only hope she has of "living a normal life" again and one day to have the children she had accepted she might not be able to have.

"Singapore or Italy - we have family in both places," she said.

For more information about AHSCT, see MS Research Australia.

James Lemon is a producer and reporter at The Sydney Morning Herald.

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