St. Clair College student participates in Tourette syndrome advocacy day in Washington D.C.
Lily Steinhoff said she hopes to grow her advocacy work
An 18-year-old student at St. Clair College is back from Washington D.C. after taking part in the annual Tourette Association of America Advocacy Day on March 5.
Leamington native Lily Steinhoff said the highlight of the trip was meeting others who were just like her.
LISTEN: This 18-year-old advocates for people with Tourette syndrome
"I have echolalia, so I was picking up everyone else's ticks," she said.
"So it was kind of funny. It's like, 'You have that tick?' 'Oh, I have that tick too.' Or … I'd have a tick, and they'd be like, 'You gave me that tick', and [I'd] and be like, 'Oops.'"
Participants in the advocacy day learned how to be resilient leaders, how to advocate, and how to do presentations in schools, Steinhoff said.
They also learned more about Tourette syndrome itself.
It's not 'just swearing'
One of the most common misconceptions, Steinhoff said, is that Tourette syndrome is "just swearing."
"That's a big misconception is that everyone swears and that people with Tourette's aren't able to work, aren't able to drive, aren't able to do a lot of things. But I can."
Steinhoff's ticks include clearing her throat, gasping and clapping, she said. Anxiety and stress make them worse.
One in 50 people in Ontario have Tourette's, she added.
Steinhoff has met other people with Tourette's on Instagram and that has helped her feel less alone, she said, as has television show Raising Tourette's, which follows families with children dealing with the condition.
And pop star Billie Eilish has spoken about her experience with Tourette's.
Watching Eilish perform allowed Steinhoff to discover that she too can experience relief from ticks while singing.
"I see her on stage, I don't see her tick, and it's just so cool to see people when they have that one thing that helps them not tick," Steinhoff said of Eilish.
Gymnastics and dancing also help, she said.
While in Washington, she met another celebrity with Tourette syndrome: TV and social media personality Baylen Dupree.
"She is one of the nicest humans I've ever met," Steinhoff said.
"I talked to her about my advocacy work and even asked her … how I can get out and advocate more. And she gave me the advice that I should just post on Instagram – post as much as I can, post facts, talk about it."
Steinhoff, who was diagnosed at age 12, is currently studying hospitality. But she sees professional Tourette syndrome advocacy in her future, she said.
Asked what she would say to other young people diagnosed with the condition, she replied, "Buckle up. It's going to be a long ride."
She also encouraged them to advocate for themselves.
"I would just say, 'I have Tourette syndrome,'" she said.
"'It's part of the neurodevelopmental system, occurs in the brain and the nervous system. It means I make movements and sounds like cannot control.'"