杭州夜生活

Family fundraising for mother’s Russian MS treatment

Diagnosed more than 17 years ago, Ms Moore’s condition has deteriorated to a point where her speech, vision and mobility are severely affected.

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Her family are pinning their hopes on a controversial treatment called haematopoietic stem cell transplant treatment (HSCT) – where bone marrow is injected with a patient’s own stem cells to “reboot” the immune system.

Clinical trials at a British hospital have shown promising results in patients with the most common form of the disease – called relapsing and remitting MS.

However, the results are preliminary, and the effectiveness of the treatment on people with the progressive form of the disease, which Ms Moore has, remains unclear.

The National Health and Medical Research Council has previously warned against what it calls “stem cell tourism” in a warning on its website about the risks of unproven treatments.

However, the Moore family says they have exhausted all other options.

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Ms Moore is slated to begin the treatment at Russia’s A.A. Maximov centre in April, and her daughter Rebecca said the family is ready to “try absolutely anything”.

“If you live with mum day-to-day, you would to see to the extent that she’s affected,” she said.

“The main things [affected] is her speech… she has the words in her brain but can’t physically get them out.

“It’s extremely difficult. I was six years old when she was diagnosed so I’ve never really known it to be any different.

“It’s really hard watching your mum go through that… you would obviously do absolutely anything to take it all away.”

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About 20 patients received bone marrow transplants using their own stem cells in a clinical trial at Britain’s Royal Hallamshire Hospital.

Some patients who were paralysed have been able to walk again.

Professor Basil Sharrack, from the hospital, told the BBC Panorama program: “To have a treatment which can potentially reverse disability is really a major achievement”.

Professor of stem cell sciences at the University of Melbourne, Dr Martin Pera, said the treatment uses chemotherapy, which is more aggressive than other treatments available.

“There are clinics offering this treatment outside of a trial setting, at considerable cost and obviously patients who are suffering will look for answers,” he said.

“But really until we have carefully conducted trials that look in a very careful way at the outcomes of this treatment will we know whether its any good.

“This is not like taking an asprin or a valium. These are toxic drugs with a number of side-effects. Certainly its not a treatment you would undergo unless you had very strong indications that it would actually do some good.”

The Moore family are fundraising to pay for Mary’s treatment.