MS sufferer left fighting for a normal life

Last updated 05:00 17/07/2013
MS sufferer
LIFE CHANGING: Rachel Winders, who has multiple sclerosis, maintains a stretching regime that helps her manage the symptoms.

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Rachel Winders may need to raise $30,000 every year for the rest of her life if she wants to stay well, but her cousin across the ditch is able to get the life-changing drug she needs free.

Doctors initially thought Winders had suffered a stroke when she was left unable to speak or feel her left side in 2001.

Then aged 27, she was diagnosed with relapsing-remitting multiple sclerosis (MS) and spent a year at Dunedin's Wakari Hospital learning to walk and talk properly again.

Winders, now 40, said she had been in remission for about two years and was not taking any medication for her condition.

"That's a really scary place to be."

When relapsing, she was plagued by numb feelings from the waist down and her eyesight would become so blurry she could not see, leaving her unable to work.

She had reacted badly to the medications funded by government drug-buying agency Pharmac and was left with only one option, a drug called Tysabri. However, it was not subsidised and would cost her $30,000 a year, she said.

She was frustrated by the disparity in treatment options between Australia and New Zealand.

A cousin in Perth, who also had MS, was able to receive Tysabri free and had found it to be "life-changing".

The drug had helped her cousin walk for the first time in seven years, Winders said.

"I want to educate the New Zealand public really about how people in some . . . situations, we don't get funded, we don't get ACC because it wasn't an accident. "It's a hidden disability. People are just unaware of the financial effects of it as well as the emotional and physical effects."

Genevieve Robinson, who has known Winders since the pair attended the same Dunedin school as 14-year-olds, has set up an online fundraising campaign for her friend.

Robinson said she wanted to see her friend "win the battle" against the disease.

"I just want to go for drives with her and walks with her and have good times with her when we're in our sixties. I don't know anyone else who could have fought so bravely through all this."

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Multiple sclerosis is a disorder of the central nervous system, which includes the brain, spinal cord and optic nerves. The condition affects about one in every 1000 people. Symptoms usually appear between the ages of 20 and 50. Women are affected about three times as often as men. 

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