JOEL INESON

Last updated14:01, July 9 2017

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Andrea Cameron-Hill has lived with multiple sclerosis for about 10 years. She wants to receive treatment in Russia that could stop the disease.

Andrea Cameron-Hill thought having to lift her leg to get in the carwhile pregnant was part of carrying twins.

About 10 weeks after they were born she learned she had multiple sclerosis (MS).

"To start with, you wouldn't know I had MS at all. But now it's 10 years on and I'm having to walk with a crutch," she said.

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MS sufferer Cameron-Hill wants to receive treatment that could stop the disease in its tracks but, despite it being offered here to treat some cancer, must travel to Russia to get it.

"If I have to go down to the floor to load the fire with wood, the difficulty for me now is getting off the floor."

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Cameron-Hill has injured her shoulder fromfalls and reliedon her husband, Paul, and sons Lachlanand Oliverto help with household chores.

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Normal household chores like washing are a challenge because of the debilitating condition.

She wanted to do things like go onto the rugby field while her childrenplayed, but MS meant she had to watch from the car.

"We've got a basketball hoop [at home], which they quite like playing, but they normally play with Grandma because I can't."

"I feel like a spectator in their lives. I hate it. I hate it with a passion."

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Cameron-Hill's sons, Lachlan and Oliver, pictured, help her complete tasks many do effortlessly.

Cameron-Hill's condition drove herto look at a treatmentused in New Zealand for some forms of cancer, but not available for MS.

She plans to head to Russia for undergohematopoieticstem cell transplantation (HSCT).

HSCT would remove, purifyand concentrate her stem cells.Chemotherapy would wipeher immune system before the stem cells were returned. An extended period of recovery would follow.

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Cameron-Hill wants to take part in her children's lives, rather than watch from the sidelines.

Cameron-Hill mustraise about $80,000 to get the treatment.So far about $10,000 has been raised through fundraising events and aGivealittlepage.

Leading New Zealand neurologist Dr Deborah Mason said HSCT wasunlikely to be trialledin New Zealand because it wouldnot make drug companies money.

Treatment for MSin New Zealandreliesonimmunosuppressantdrugs.HSCTwaslikened more to a surgical procedure than drug treatment.

"It's incredibly expensive ... We're very keen to participate in [trials and research] and I'd certainly enroll patients, but it's just finding somebody who would fund that, and nobody will because there's no drug involved," Mason said.

Mason saidHSCT might help young patients in the early stages of MS.

She said the treatment was "unproven" and came with risks.

"It's really hard to imagine why I get all these calls about bone marrow transplants ... all bone marrow transplant allows us to [do is] give industrial doses of chemotherapy."

"People talk aboutrebootingthe immune system and all of that. There isn't a lot of proof of that."

Mason knew of about six or seven people who had travelled forHSCT, but did not have a lot of follow-updata.

Studies and clinical trials New Zealanders took part in primarily focussed on medication.

Her "big beef" was with the government not allowing the use of some drugs, "which we absolutely know will benefit the patients".

The Multiple Sclerosis Society of New Zealand recently changed its standpoint on HSCTafter a report indicated the treatment workedfor some with MS in Australia and the UK.

Vice president Neil Woodhams said the group asked the Ministry of Health to start a process to lead to eligible people havingHSCTin New Zealand.

Cameron-Hill's MS had not progressed since 2013and she had not been on medication for it since.

She recently met Christchurch manRoyce Brewer who lived with MS for about 20 years. After undergoing HSCT in Russia in early 2016, hereturned to work as a landscaper at the end of the year.

"I'd just really love to be able to do ... normal stuff that parents do with their kids," Cameron-Hill said.

The Health Research Council of New Zealandhad not funded any research regarding MS andHSCT, a spokeswoman said.

-Stuff

Read the original:
Christchurch MS patient Andrea Cameron-Hill plans Russia trip for stem cell treatment - The Press

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