Kiwi Amy Clague to get MS stem cell transplant in Israel
Amy Clague always felt tired at high school, and those around her simply put it down to being a teenager. But at the age of 20, she found out she had multiple sclerosis.
Clague, now 22, heads to Tel Aviv to undergo a five-week stem cell transplant on February 7 in the hope that it will halt the disease progression.
She grew up in Auckland, but moved to Wellington about three years ago. Her partner Luke Palmer lives with her in Melrose, and she works as a nanny.
Clague found out she had MS when her mother was visiting her in Wellington for her 20th birthday.
"I went numb down one side of my body, and it just got worse over the next couple of days," she says.
Her mother, a neurological physiotherapist, immediately suspected MS, which Clague's aunt also has.
"It's in the family, so it wasn't a massive surprise."
Yet Clague had no idea what she was in for. "I just knew what it stood for, and that my aunt had it.
"But I couldn't have told you what it affected. I knew Sarah on Shortland Street had it."
There is no known cure for MS, but Clague now understands much more about it.
Clague has relapsing remitting MS, where symptoms occur in isolated attacks. There are also progressive forms, where symptoms build up over time.
Clague endured about five relapses in the year after her MS was discovered, and started recovering from her relapses less and less – which is when the MS can turn into a progressive form.
"I eventually qualified to go on a daily injection, which is kind of the only treatment there is for MS, and is meant to reduce relapses."
Since getting the daily injections, she has had only two relapses in the past 18 months.
"MS is when your immune system attacks the myelin, the covering of your brain," she says.
The symptoms are random and fluctuating. "It can affect vision, strength, feeling, walking, headaches, fatigue. Everything."
There is no pattern to it, and no ability to predict what may happen next.
"You can just wake up and not be able to walk," Clague says. "You just feel so out of control."
Clague believes she has been experiencing symptoms from the age of about 13 or 14.
Palmer agrees, saying it seems there were telltale signs all along.
"It answers all your life-long questions about why you are the way you are."
Clague says she just wants to be able to enjoy her life.
"I don't want to waste life or waste time. It's such a cliche – but every day is precious and valuable, and I never take for granted the fact that I am reasonably healthy and well."
The treatment will not undo any damage, but it is supposed to reset the immune system and prevent further damage.
Multiple Sclerosis New Zealand vice president Neil Woodhams says people with MS should always make sure they receive the very best advice.
"At this stage, the treatment looks exciting but it is still experimental and there are significant risks. The procedure itself is a high-risk procedure."
A few other medications have been available in the past 18 months.
"They don't necessarily work for everybody, but it would be really important that people tried them before racing off and having stem cell transpants," Woodhams says.
Clague says she was on the waiting list for the stem cell treatment in Russia, but she could not be treated until the end of 2017.
"Israel was able to have me this year. It was twice the cost of Russia, but twice as soon."
To cover all costs, Clague needs to raise $200,000.
HOW TO HELP:
* Clague has raised $25,447 from 278 donors so far on her Givealittle page.
* Visit givealittle.co.nz/cause/supportamyms to donate. The page will remain open until at least April 2016.