We were lucky enough to have a conversation with Sylvia Leonard, Interim CEO and president, MS Society of Canada. The MS Society of Canada provides services to people living with multiple sclerosis and their families to enhance their quality of life and funds research to find the cause and cure for this disease. Sylvia talked with us about the importance of having a support system, what she would tell individuals and families struggling with a new MS diagnosis, and the most challenging (and rewarding) parts of her work. – Yael
Why is it important for people living with MS to have a strong support system, both inside and outside the family?
MS does not define the person living with it. You are first and foremost yourself and MS is an important part of that, but it isn’t the whole picture. The way I like to think about the question of having strong support systems both inside and outside one’s family is that it’s important for anybody to have a balanced and varied network, the importance is simply amplified for somebody living with an episodic illness or disability.
In my conversations with people I have heard, overwhelmingly, that one of the hardest parts of living with MS is the unpredictability of the disease. The reality is that a person living with MS doesn’t always know when they will need to take time off from work, or require a mobility aid to get around. Having a system or a network of people in place who can support you in various ways when something comes up, can make living with MS a little bit less intimidating. It can also sometimes help to reduce the psychological impacts brought up by the loss of one’s independence.
What is something you would tell families of children who have been recently diagnosed with MS (or any chronic condition)?
That they are not alone. That we are here to help in any way that we can, and that there are communities out there – online and in person across the country – who can be an amazing source of support and comfort throughout a person’s journey with MS. We’ve come a long way, and receiving a diagnosis of MS doesn’t mean the same thing as it did 15 or even 10 years ago. We know so much more about MS now than ever before, and there are multiple options for managing MS and maintaining a good quality of life.
Also, depending on the age of the child and their ability to understand the implications of a diagnosis of MS, it can sometimes be more emotional for parents or even older siblings than on the child themselves. It’s important to remember that MS affects everybody in the family and that each member will need support in their own way.
What can they do to better prepare for life after an MS diagnosis?
MS affects everyone differently, so it’s difficult to offer generalized advice about how to prepare. I think one of the best things people can do, regardless of their specific circumstances, is to inform themselves. We pride ourselves on providing up-to-date, research-based information about the latest advances in MS research, about any new programs and services available to people living with MS or their caregivers, and any other news we believe might be relevant to Canadians affected by the disease.
Finding a community and putting that wide-reaching support network in place is so important, but knowing what’s out there and what’s happening in the world of MS can really help you build a plan that works for you in terms of how you’ll manage your disease.
What is your organization’s most used resource? Medical advice/Research participation/ Financial aid...?
Everything we do is done because there’s a need for it in the MS community. We communicate with our members on a regular basis through a multitude of channels to ensure that we are listening to the needs of Canadians affected by MS and responding accordingly.
We are primarily a trusted source for reliable MS information, and the largest funder of Canadian led MS research today with a focus on all aspects of the disease including research dedicated to progressive MS. We also offer support in a multitude of ways through resources such as our MS Navigators, our volunteer legal advocacy program, the friendly visitor program, our blog and research updates – among other MS Society services.
Has technology changed the way people are connecting with each other and sharing information about MS management? How is your organization putting new technology to work?
Technology has absolutely changed the way people are connecting with each other in the MS community. We see connections being made through social media every day. Kayla Chatiewicz starting #ChatMS on Twitter has been an enormously comforting community for so many, and the ability to meet, albeit virtually, other people of similar age who live with the disease removes some of that sense of isolation living with MS can bring. We try to tap into that resource by keeping our social media channels incredibly active, and by providing fast, reliable information through our blog.
Technology has also been making its way into symptom management through endeavours like
Hack for Health and the Hermès | MS Society of Canada funded Wellness Research Innovation Grant studies, which are looking at the effectiveness of using tech to bring wellness solutions to people affected by MS.
What do you consider to be the most profound/inspiring part of your work?
Knowing I’m part of the fight to end Canada’s disease is what drives me to get out of bed and into the office every morning. Nothing brings that to life quite like working alongside some of our incredible volunteers, many of whom live with MS themselves. I’m thinking of people like Amanda Piron who is one of our MS Ambassadors and a peer support leader for the kids at MS Summer Camp, among about a hundred other things. People like Marie Vaillant who volunteers as Chair of the Board of Directors of the Ontario & Nunavut Division and works so hard to improve the future for people living with MS; and people like Aaron Solowoniuk who consistently uses his voice to speak for people affected by MS and to draw attention to the cause. I’m surrounded by inspiring people every day, that is the best part of my work.
Anything else you’d like to share about your experience?
I just feel very lucky to work alongside such passionate, driven people who are so connected to the cause of ending MS. Canada has the highest rate of MS in the world, and we’re very fortunate to also have some of the world’s best researchers devoted to improving the lives of people living with the disease. I really encourage people to join #TeamFight and experience the level of support and inclusiveness this community fosters.