MS sufferer pins hopes on Russian stem cell treatment
A LISMORE woman with multiple sclerosis has found hope in a Russian stem cell treatment costing $50,000 and up to a year in recovery time.
Sue Potts was diagnosed with the disorder, which attacks the central nervous system, eight years ago.
It has greatly restricted her ability to walk and leaves her exhausted by lunch time.
"I just want to stop the progression, I don't want it to get worse," she said. "At the moment I'm fine with myself, it's just my legs, I struggle to get around."
When Mrs Potts was diagnosed in 2008 it was "bitter relief" for her and husband Barry; they had spent the past two years asking what was wrong with her.
"There were the symptoms - the pins and needles in the fingers, the numbness in the leg, double vision, but it would come and go and it wasn't all at once," Mr Potts said.
"When we got the diagnosis, it was like 'oh, crap, okay, well at least we know what it is ... what do we do from here?'
"We've learnt to cope with it, we accept it now.
"It would be great to stop it where it is but it would be even better to reverse it so Sue can come out and socialise more."
The couple first heard about the controversial stem cell treatment called HSCT in 2014, when it was featured on TV show 60 minutes.
It was reported at the time the treatment had a 1% mortality rate, down 8% from when it was first practised in Moscow a decade previously.
The treatment's developer, Dr Denis Fedorenko, will see Mrs Potts as his patient in mid February.
Mrs Potts will spend a week getting evaluated before Dr Fedorenko basically reboots her immune system using her own stem cells after high-dose chemotherapy.
"Then it's 10-14 days in isolation, so we see each other through a double-glazed window in that time," Mr Potts said.
If all goes well the couple will then return home, where Mrs Potts will need to let her immune system recover for at least six months.
Mrs Potts said she was nervous, a bit scared and excited all at the same time about the stem cell treatment.
She said her family and friends had been extremely supportive and she was hoping the community would get on-board to help her raise $20,000 for airfares, accommodation and a bit of the treatment.
The couple will hold raffles and fundraisers over the remainder of the year, but Mr Potts has also set up a GoFundMe page for people to make direct donations.
It can be accessed by searching "Stem Cell Therapy for Sue" on gofundme.com
HSCT is now available in the US, but Mr Potts said the queue for treatment was very long.