The group may have been small, but they were mighty.
Bradford resident Lisa Michel, the representative for the Simcoe County Affiliate for Tourette Canada, led a team of friends and family in the 13th annual Trek for Tourette on Sunday (the second to be held virtually) raising more than $1,600 for Tourette Canada, an organization that has been a lifeline for her family since her son, Liam, was diagnosed with Tourette syndrome (TS) when he was five.
“There isn’t really a lot out there in terms of education or resources, or even services locally,” she told MidlandToday, adding the trek is the organization’s only national event.
“It’s funny because one in 100 people have Tourette syndrome," added Michel, who is head of the Simcoe County chapter. "It’s that common but there’s so little known about it or resources.”
Michel’s son, who has recently developed a love of video editing, has helped create a few educational videos to help spread awareness of the TS.
TS is a neuro-developmental or brain-based condition that causes people who have it to make involuntary sounds and movements called tics.
Michel noted no cause has yet been determined, however, it is genetic.
It’s also extremely misunderstood, she acknowledged.
“People think Tourette's is the 'swearing disease'. Even still, in this day and age, it’s the butt end of a joke. If you Google Tourette’s, you’re going to find memes poking fun at someone swearing,” she said.
While that is something that can impact some people with TS, it’s actually not very common, Michel noted.
Another misconception, she added, is some people believe TS is a mental delay.
“People are treated as if their brains are not up to par with everyone else. They are actually quite brilliant and there are quite a few notable people out there with Tourette syndrome that people don’t even realize have it,” she said.
Michel listed international football player David Beckham, as well as Canadian comedians Dan Aykroyd and Howie Mandel.
“It doesn’t affect your intelligence with your IQ in any way at all," she said.
The tics, Michel added, are often just the tip of the iceberg when it comes to living with TS.
“We’re dealing with confidence issues, social anxiety, rage outbursts. It’s been really difficult to navigate because there’s no rhyme or reason sometimes," she said. "Sometimes the tic attacks can be exacerbated by excitement or fear or sadness… or it just be random. It’s a non-stop learning curve.”
