St. Clair College student participates in Tourette syndrome advocacy day in Washington D.C.

CBC News

· Posted: Mar 28, 2025 4:00 AM EDT | Last Updated: 1 hr ago

An 18-year-old pupil astatine St. Clair College is backmost from Washington D.C. aft taking portion successful the yearly Tourette Association of America Advocacy Day connected March 5. 

Leamington autochthonal Lily Steinhoff said the item of the travel was gathering others who were conscionable similar her.

LISTEN: This 18-year-old advocates for radical with Tourette syndrome

"I person echolalia, truthful I was picking up everyone else's ticks," she said.

"So it was benignant of funny. It's like, 'You person that tick?' 'Oh, I person that tick too.' Or … I'd person a tick, and they'd beryllium like, 'You gave maine that tick', and [I'd] and beryllium like, 'Oops.'"

Participants successful the advocacy time learned however to beryllium resilient leaders, however to advocate, and however to bash presentations successful schools, Steinhoff said.

They besides learned much astir Tourette syndrome itself. 

It's not 'just swearing'

One of the astir communal misconceptions, Steinhoff said, is that Tourette syndrome is "just swearing."

"That's a large misconception is that everyone swears and that radical with Tourette's aren't capable to work, aren't capable to drive, aren't capable to bash a batch of things. But I can."

Steinhoff's ticks see clearing her throat, gasping and clapping, she said. Anxiety and accent marque them worse. 

One successful 50 radical successful Ontario person Tourette's, she added. 

Steinhoff has met different radical with Tourette's connected Instagram and that has helped her consciousness little alone, she said, arsenic has tv amusement Raising Tourette's, which follows families with children dealing with the condition.

And popular prima Billie Eilish has spoken astir her acquisition with Tourette's.

Watching Eilish execute allowed Steinhoff to observe that she excessively tin acquisition alleviation from ticks portion singing.

"I spot her connected stage, I don't spot her tick, and it's conscionable truthful chill to spot radical erstwhile they person that 1 happening that helps them not tick," Steinhoff said of Eilish.

Gymnastics and dancing besides help, she said. 

While successful Washington, she met different personage with Tourette syndrome: TV and societal media property Baylen Dupree.

"She is 1 of the nicest humans I've ever met," Steinhoff said.

"I talked to her astir my advocacy enactment and adjacent asked her …  however I tin get retired and advocator more. And she gave maine the proposal that I should conscionable station connected Instagram – station arsenic overmuch arsenic I can, station facts, speech astir it."

Steinhoff, who was diagnosed astatine property 12, is presently studying hospitality. But she sees nonrecreational Tourette syndrome advocacy successful her future, she said.

Asked what she would accidental to different young radical diagnosed with the condition, she replied, "Buckle up. It's going to beryllium a agelong ride." 

She besides encouraged them to advocator for themselves.

"I would conscionable say, 'I person Tourette syndrome,'" she said. 

"'It's portion of the neurodevelopmental system, occurs successful the encephalon and the tense system. It means I marque movements and sounds similar cannot control.'"