Canadian Multiple Sclerosis Monitoring System.

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It takes a community to build the Canadian MS Monitoring System

Three years ago, Dorothyanne Brown was diagnosed with multiple sclerosis (MS). No longer able to continue her professional life as a nurse, primary health care manager and epidemiologist - she focused on other interests such as writing, volunteering and playing the ukulele.

Recently, Dorothyanne moved to Nova Scotia to live in her “holiday paradise,” given that trips are becoming less accessible for her, both physically and financially. But it’s not all play and no work. Last year, she took on a new role, becoming one of the many experts working with us to build the Canadian Multiple Sclerosis Monitoring System.

This is a pan-Canadian system to measure and monitor the evolution and treatment of multiple sclerosis in Canada. We’ve been working on this since April 2011. This September, we will be ready to collect information related to MS, including diagnosis, treatments, interventions and patient outcomes. 

We’re accustomed to consulting with a long list of experts on the data we collect. For the development of the Canadian Multiple Sclerosis Monitoring System, those experts include people living with MS.

That’s where Dorothyanne comes in. She says in the beginning of a project like this, you don’t have a community—you have voices around the table.

“Those voices have different interests and different ways of doing things. But what matters is that they all want the same solution . . . and that their hearts are in the right place. Broad consultation is good in the end, but it is not always easy.”

With the workload and commitment that comes with being an advisor on two separate committees, Dorothyanne’s contribution is substantial. The demands are high for everyone involved, but for someone living with the daily struggles that MS brings, the challenges are significant. So why did she agree to take this on?

“It was a no-brainer,” she says. “It may just be the most important thing I’ve ever done.”

For her, it was an opportunity to help bring it all together.

“MS is such a varied disease—people’s symptoms, what works, how they feel over time, what they experience—it can be so different from person to person. Add to that anecdotal information, new drug therapies and interventions like CCSVI happening largely off screen and the bottom line is we just don’t know what's really going on in people with MS. And we need to. We need to figure it all out.”

To Dorothyanne and others living with MS she’s talked to about the Canadian MS Monitoring System, there’s clear logic in combining information and grouping it to see patterns.

That’s why, despite the workload and the challenges MS brings to her daily life, Dorothyanne is glad to be involved.

“I refuse to miss a meeting. It is so important to have people living with MS making a real contribution to this initiative.”

And what’s she hoping for in all of this?

“Amalgamated data to look at MS to identify more clearly what works and what doesn’t. Maybe there are more types of MS than we’ve identified so far and maybe this treatment will work best for this type but a different treatment would work best for this person. We need to tease it apart. We need to see how people progress over time.”

Dorothyanne’s mission—like all of those around the table working to create a community that can build a Canadian MS monitoring system—is simple.

“I have been living with MS and studying MS for three years and I feel like I still know nothing and I hate that. We need to offer hope. I want people coming in to see hope . . . to move from what might work to what will work . . . to find solutions.”

Her advice to everyone involved is the same advice she lives by: keep on keeping on . . . over barrier after barrier . . . it’s worth doing.