Treatment restores ‘freedom’
Like thousands of other Kiwis, Margot Koko fills her weekend deep in domestic life – in her case, nipping up a ladder to hang an ornament on a wall before rustling up a nice relish.
A year ago such mundane tasks would have been beyond her. Multiple sclerosis – a disease of the central nervous system that affects movement, sensation and body functions – has for more than two decades ravaged her body. It took her to such dark places she had to give up work, was left on antidepressants and needing help from a psychologist.
She could barely walk across a room unaided – if she was even able to get out of bed – struggled to concentrate enough to read and felt robbed of the normal life she desperately wanted.
All that changed when she underwent stem cell treatment in October, a therapy that effectively resets a person’s immune system and stops it attacking their own nervous system. The treatment is not available in New Zealand, so Koko and her husband, Tom, had to raise more than $80,000 to travel from their home in Christchurch to a private clinic in Mexico.
The results were immediate. ‘‘After my first lot of chemotherapy, I got rid of my walking cane and frame. There were benefits straight away,’’ she said.
Those benefits have multiplied in the months since. ‘‘I have got my life back,’’ she said.
About 4000 Kiwis have multiple sclerosis. Koko, 43, is not alone in looking abroad for treatments that can potentially halt the disease.
Some have sought therapy in Russia, in particular hematopoietic stem cell transplantation (HSCT), which involves chemotherapy and stem cell replacement.
HSCT, which Koko received, is used in New Zealand for some forms of cancer but is not available for MS, although disease modifying treatment drugs are available. It is a position the Multiple Sclerosis Society of New Zealand (MSNZ) wants changed, calling on the Ministry of Health in
2017 to make it available publicly for certain patients within clinical trial settings.
According to MSNZ’s website, much of the scepticism surrounding HSCT is due to early transplants raising a number of concerns about the safety and efficacy with several long-term lifethreatening complications.
More recent trials have defined the criteria for whom success is most likely to be achieved.
Koko’s diagnosis came at the age of 22, almost six years after she woke up one day as a 16-yearold to find she was temporarily blind in her left eye.
Despite years of frustration – of debilitating exhaustion that meant making dinner was a major achievement, of having to give up dreams of studying, of repeated steroid treatments – Koko feels she has had a ‘‘great’’ life. ‘‘I have a beautiful husband who has been amazing, I’ve been able to have children and I was able to play sport – I played netball.’’ But MS ate away at her confidence, and after hitting rock bottom three years ago she decided to look at treatment options. ‘‘I got to the point where I was using walking devices, I had no control over my bowel and bladder and I couldn’t run my family home.’’
After researching overseas treatment she contacted MS sufferers – and found someone in Christchurch who had been through a similar journey.
Koko no longer has bladder and bowel dysfunction, her cognitive abilities have improved and the fatigue has lifted. She urged others to undertake their own research.
‘‘I have freedom now, in my body and mind.’’