'Don't apologise': Tourette Syndrome stigma remains

There are calls to reduce stigma faced by people with Tourette syndrome, which affects around 1 in 100 children in Australia.

Adam Ladell

Adam Ladell suffers Tourette syndrome. Source: SBS World News

For 18-year-old Adam Ladell, the involuntary muscle tics and twitches caused by his Tourette Syndrome are sometimes so severe they keep him up at night.

He says dealing with the stigma surrounding his condition can also be exhausting.

"In public it can be quite difficult, because if someone doesn't know what it is they tend to treat you differently, like, they might look at you weirdly," he said.

"I think a lot of the time people either think you're just being a teenage kid messing around or else they think you're on drugs or something."

Adam Ladell braved a national television audience at just 16, as a contestant on Channel Nine's The Voice.

He came runner-up - helping to raise the profile of the neurological disorder, but he says Tourette Syndrome remains widely misunderstood.

"One thing my friends always tell me is to not apologise, because when I say something I just instinctively apologise. If we insult someone, we don't want to do it, and we feel bad for doing it because we feel like we've hurt someone's feelings."

Tourette Syndrome Associate Australia President Robyn Latimer says a lack of understanding contributes to the stigma.

"People think Tourette's is (just) swearing. And there is a tic in Tourette Syndrome called coprolalia that involves obscenities or socially taboo language, but that only occurs in less than 10 per cent of cases," she said.

"But for those who do have it it's very socially difficult and they spend a lot of their lives having to apologise and explain themselves."

The cause of Tourette Syndrome is not known, but doctors understand there is a known genetic component.

Dr Perminder Sachdev, Scientia Professor of Neuropsychiatry at the University of Sydney, believes many people struggle to understand why people with Tourette Syndrome are unable to stop their tics.

"It's like having to sneeze, where you have that urge you may postpone it for a short period, but then of course, you have to give in to the urge."

He says some patients experience a reduction in symptoms when they are absorbed in a focused activity, but it's still not fully understood why this occurs.

"We've seen actors who when they come onto the stage, are very focused and they don't have tics. They may take breaks every half hour or so and go away and do a few tics and come back and continue their acting.

"And we've known surgeons who, when they're operating they don't have tics but as soon as they get out of the operation theatre they may have quite a lot of tics in some cases."
Dr Sachdev says there is a vast spectrum of Tourette Syndrome, and for many people symptoms are so mild they do not require treatment.

For others treatment with medication or behavioural therapies may offer some relief of symptoms, but there is no cure.

Dr Sachdev says surgical intervention is risky and only used in the most extreme cases, but a technique called deep brain stimulation has provided an improvement for people with severe symptoms.

Researchers are currently working to overcome legislative hurdles in order to study the efficacy of medicinal cannabis to alleviate symptoms.


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