Canada has one of the highest rates of multiple sclerosis (MS) in the world. Every day an average of 11 Canadians are diagnosed with MS. Women are three times more likely to be diagnosed with MS than men. The unpredictable, episodic, and progressive nature of this disease creates serious financial and practical challenges for Canadian families who live with MS. This is why we launched the “Join the Campaign to Improve #LifeWithMS” letter writing campaign asking members of parliament to support these critical priorities:
Our collective voice is already making an impact. This past May, Mr. David Yurdiga, Member of Parliament for Fort McMurray – Cold Lake, tabled a Private Member’s motion (M-192) focusing on episodic disabilities like MS. When you participate in our campaign, you are asking all MPs to support this motion. Additionally, on June 20, the federal government tabled the proposed Accessible Canada Act, which includes “episodic” in the definition of disability.
Since we launched the campaign, thousands of Canadians affected by MS from across Canada have sent letters to their Members of Parliament. These letters included deeply personal and profound stories of their #LifeWithMS. These letters highlight the real lived experience these priorities have on the lives of Canadians living with MS including the day to day financial struggle to make ends meet, employment issues, concerns with the costs of treatments, and accessibility issues in the community.
These stories reinforce the need for MPs to take action. Here are some of the personal stories being shared in letters to MPs from members of the MS community across the country:
“My son has MS and lives on his own. He does not get enough monetary support from the government. He is unable to work, and rent is expensive. He feels like nobody cares. He and everyone with MS need more help.”
“I watch as my daughter, a single mother with 3 sons who have some neurological differences, tries every day, to support herself and her children without leaning on others or government. She has MS and will not allow this disease to become her identity. She finally went back to work full-time and was diligent in her dedication to her minimum wage job. She is worried about what will happen to her in her old age. This stress does not help her fight MS, as stress only worsens symptoms. Then it happened; she suffered a relapse, optic neuritis, wherein she lost sight in her right eye. Because this is a temporary condition, and a pre-existing condition, disability coverage is difficult to obtain, and the stress she felt again and the confusion on the part of her employer as to what to do was not helpful. MS sufferers need support from all levels of government, and funds should be released from all levels for research into this disease.”
“As a Canadian with MS who has been surviving on part-time jobs and has no hope of ‘retirement’ or work pension, the addition of ‘episodic’ to the working definitions, as well as continued support of Canadian research, are absolutely of deep and immediate concern for me as a voting Canadian. Please ensure your support for these improvements and advocacy for the many Canadians looking at a lifetime of anxiety and dread about our ability to live with equal rights and protections.”
“We need to create organizations in communities that can help people like my mother in some of her day-to-day challenges. These services could provide mobility aides, appropriate physiotherapy, help with designing/arranging for modifications in homes, help with cooking and cleaning, or even just support groups to meet physical/psychological needs. And this doesn’t even begin to address the issues that MS patients face in the workforce/place (should they even be able to continue to work) and their ability to afford treatment. You have been made aware that Canada has one of the highest rates of MS in the world, and it’s time to start helping these individuals live more fulfilling lives. Thank you for your consideration in this important matter.”
Our letter writing campaign is getting close to reaching its goal of 5,000 letters, and you have the power to get us there! Sharing your personal stories and showing your support can help improve #LifeWithMS for Canadians diagnosed with the disease, as well as their friends, families, workplaces, and healthcare teams who all come together to manage the realities of multiple sclerosis.
Act now! Send your letter today by clicking here, and don’t underestimate the power of your network. Spread awareness across social media by using our #LifeWithMS hashtag and help us optimize our efforts. Together, let’s improve #LifeWithMS.
There is still time to join the campaign as it runs until the end of October.