MPs wear carnations in support of MS awareness month

OTTAWA ­– Canada has the highest rate of multiple sclerosis in the world and while no one knows for sure why that is, politicians and members of the MS Society of Canada met in Ottawa for MS awareness month to discuss ways to address that statistic.

More and more people are diagnosed with MS each year, and most of them are women. Karen Scott, 58, was diagnosed with the disease five years ago. She was in parliament on Tuesday to hand out red carnations to MPs, as part of the MS Society’s effort to keep the government informed on what people with her condition must struggle with on a day-to-day basis.

At least 100,000 Canadians have been diagnosed with the autoimmune disease that attacks the myelin, or the protective coating around nerve fibres. Once the coating breaks down, so does the communication within the body, resulting in symptoms ranging from tingling, lack of sensation and coordination, mood swings, and fatigue.

For Scott, she experienced a deterioration in her mobility. Since 2010 she went from relying on a cane, to a walker and now she is in a $12,000 wheelchair. Scott wants MPs to know more about the high costs of supporting a person with MS. The Ontario government covered 80 per cent of the cost of her wheelchair, and she paid for the rest, but not everyone can afford the expenses people with MS have to bear.

“Many people with MS living on $12,000 a year (through disability benefits). There needs to be more income security for those people,” Scott said.

Tweet This Click to share quote on Twitter: "Many people with MS living on $12,000 a year (through disability benefits). There needs to be more income security for those people," Scott said.

Nearly 80 per cent of people with MS become unemployed as the disease progresses, according to the MS Society. People are commonly diagnosed anywhere between the ages of 15 to 40 years, the years of their life where they should be working. But the disease can be episodic and it’s difficult for those affected to keep a job.

The government has addressed other areas to alleviate some of the costs of looking after a loved one with a disability. The 2015 budget introduced a compassionate care benefit and a tax credit for people who make their home more accessible, such as including a $4,000 chair lift for someone in the family who can’t make it up and down the stairs.

The president of the MS Society, Yves Savoie, said that he met with 20 MPs from all parties on Tuesday to discuss “Canada’s disease,” the need to improve access to employment for people affected by it, and how new research involving stem cells is giving many people hope.

In January, the MS Society announced $4.2-million for a human clinical trial involving stem cell research in Ottawa and Winnipeg. Savoie said the stem cells have the potential to increase the capacity of the coating on the nerves, the myelin, to resist the immune attack.

“This gives a lot of hope that people might be able to avoid the kind of decline that comes with the progressive phases of the disease,” he said.

Liberal MP, Hedy Fry, was also handing out carnations to fellow politicians as they arrived in the house for question period. Fry is a physician and has had many patients who were affected with MS, especially women.

“Canada’s famous for a lot of things, hockey being one of them, but actually we’re also infamous for having the largest number of people in the world with multiple sclerosis,” she said.

Doctors don’t know the factors involved in what causes the disease, but Fry said there are studies showing that vitamin D deficiency has a lot to do with it. The sun is one source of vitamin D (also found in some foods and supplements), and since Canada is a northern country not many people get enough of the sunshine vitamin.

Other risks that are affiliated with MS include obesity, smoking, and genetics. So far, there are 10 treatments available for the most common type of MS, those with relapsing and remitting cases, but what is missing is finding treatment for the most devastating type of MS.

MS awareness month continues on May 14, with the fundraising campaign #TakethePledge where people will do Canadian-style challenges to raise money for research.