Radical stem cell treatment in Russia gives hope to Whanganui MS sufferer

Four years ago Briar Novis was diagnosed with relapsing remitting multiple sclerosis and since then her life has taken a dramatic turn.

She can no longer walk without the assistance of her crutch and is permanently tired and fatigued.

For the past 27 years, Novis has worked at Countdown on Victoria Ave in Whanganui and is well known in the community through her job.

"That place is like my second home - they are family. I have kept working with my condition but only part-time.

"I used to run a lot, and would always walk to work, but I can't do either anymore."

When Novis was diagnosed, her neurologist told her there was no cure for MS and her condition would progressively get worse.

She remembered seeing a 20/20 documentary about the autologous haematopoietic stem cell transplantation (aHSCT) for MS patients and re-watched it after being diagnosed.

"After re-watching the documentary I had made my mind up this was what I wanted to do. I wanted my life back."

The treatment is not available in New Zealand but has been used in Russia, and other parts of the world, since the 1960s.

For four days patients undergo chemotherapy and then stem cells from their bone marrow are collected and stored. Once this is complete, the patient's immune system is disrupted and the bone marrow stem cells are replaced.

The therapy takes five weeks in total with about nine days in isolation. When Novis returns home after treatment she will be kept in isolation for three months, and won't get her whole immune system back for around two years.

Novis said when she told her neurologist she wanted to go ahead for stem cell treatment he didn't want to know.

"So I went to my GP, Dr Andrew Zimmerman, who has been really supportive about the whole thing."

Zimmerman said Novis' condition was at the severe end of the spectrum, especially with the symptoms she was experiencing at her age.

"She is making a brave decision to go down this path. She has tried the conventional treatment and she's still symptomatic so I understand why she's doing this and I support her."

But Zimmerman said the treatment was still in the experimental stage.

Last year, the Multiple Sclerosis Society of New Zealand changed its standpoint on aHSCT after success stories had been reported from the UK and Australia.

In November last year, society vice-president Neil Woodhams said the society supported the use of this treatment within a clinical trial setting under established international protocols.

"Current research shows that aHSCT is a viable treatment option for people with MS who are early in their disease course, with highly active relapsing MS and have tried and failed at least one, if not two of the treatments funded by Pharmac," Woodhams said.

Novis has spoken to a Whanganui man in his 60s and an Australian woman in her 40s who have successfully had the treatment.

"I've been told that it won't cure my MS but just halt the progression, but meeting the man in his 60s you couldn't even tell he had MS anymore, and the woman in Australia has just given birth which is amazing- it's changed their lives."

Two years after getting diagnosed Novis met her partner Kelvin Williams who has been her rock throughout.

For him, the stem cell treatment would mean the world.

"I just want her to get her life back, a life like you and me. It would mean she could be a bit more of a hand when we go fishing too," Williams said.

Novis' mum Cherry Novis said from what they had seen the success rates have been about 80 per cent.

"I want her to be able to do the things she used to do and to walk without her crutch."

Briar Novis will travel to Moscow in October with her mother and Williams. For treatment, travel and accommodation they need to raise $95,000.

A Givealittle page was set up by Novis' dad Ron Novis on January 10 and has already raised nearly $6000.

To make a donation visit Novis' Givealittle page or bank deposit to Briar Novis ANZ 06-0793-0805932-00.

To track Novis' progress, see her Facebook blog.

About MS:

• MS is a progressive disease of the central nervous system, for which there is no cure
• MS affects 2.3 million people worldwide and 4000 people in New Zealand
• More women than men have MS, with a global ratio of three women to one man
• Diagnosis of MS is generally between 20 and 40, although onset may be earlier
• MS attacks the nervous system. Symptoms can include sight loss, pain, fatigue, incontinence and disability
• Early diagnosis and treatment are important
• MS is unpredictable - one day you can be fine, the next you might lose your sight or be unable to move