Multiple sclerosis (MS) is a neurological disease that can present itself in a progressive form and cruelly affect people who are affected by it.
Posted at 1:00 p.m.
MS often targets people in their prime, interfering with many areas of their lives. It can manifest as mobility problems and other physical symptoms. MS affects mental health and can have a profound impact on people with MS’s finances, jobs, friendships, families and communities.
Our country has one of the highest rates of MS in the world. In Canada, more than 90,000 people have it; 12 new cases of MS are diagnosed every day. And there is no cure for MS. But we are working on it.
May is Multiple Sclerosis Awareness Month. There is a single word in Canada to describe the next big step in raising awareness of MS and making it possible to prevent the disease and find a cure for it. This word is “action”.
We must take action to accelerate research. We must act to increase funding for research and to support Canadians living with MS by providing them with better living conditions and housing.
Last week, MS Society representatives stormed Parliament Hill to meet with MPs and ask them to take action on multiple fronts, especially as the global pandemic has slowed the momentum of the research. However, the discovery of a cure inevitably passes through research.
The pandemic has had a significant impact on the MS Society’s fundraising activities, resulting in a decline in research investments. In 2020, the research budget halved to $5 million. Last year, it was cut in half again, to $2.6 million.
This year, we hope to return to normal, but the goal is ambitious.
We need new grants from the Canadian Institutes of Health Research (CIHR) to further explore a potentially game-changing avenue: the Epstein-Barr virus plays a triggering role in the onset of MS. If researchers can decipher the link between the Epstein-Barr virus and MS, their work could lead to the development of a vaccine to prevent MS.
We also asked MPs to introduce the Canada Disability Benefit and make it available to people living with an episodic illness, such as MS. MS is a complex disease unlike any other. More than 70% of those affected have the cyclic form (relapses-remissions) of this disease.
The flare-ups, which are accompanied by various symptoms, can last a few days or a few weeks. The unpredictability and varying duration of flare-ups disrupt the lives of those who experience them, leading to job loss, financial problems, stress and mental health issues.
Accommodation is another key issue. The MS Society is studying accommodation models that are better suited to the reality of people living with MS who want to stay at home as long as possible. Some of them, as young as 35 or 40, reside in long-term care facilities – a situation that results in deteriorating mental health and a sense of loss of control over their lives. Innovative housing models, such as Espace Bellechasse, where tenants can have support while remaining independent, have proven themselves and could be replicated.
We live in a time of hope. At present, we are about to witness new discoveries. Through concrete actions from government and Canadians from coast to coast to coast, we aspire to a future where people with multiple sclerosis are no longer defined by their disease and live their lives to the fullest.