Tourette’s sufferers find solace at camp where twitches and grimaces are accepted
Living with Tourette’s isn’t easy for sufferers or their families — mostly because of the way people react to sudden outbursts of swearing or strange sounds and movements.
But there’s one place, once a year, where they can feel free.
Jack Van Hees says it’s good to be around people who understand his behaviour (ABC News: Jerry Rickard)
“It’s just good to be around other people who understand,” said Jack Van Hees in between twitches, grimaces and whistles.
“There’s no-one watching, you can be who you are and just let it all out, you know.”
The 16-year-old is one of 200 people who travelled to the NSW Central Coast to join the biggest ever gathering in Australia of people with Tourette Syndrome.
Larissa Gardner went with her 9-year-old daughter, Charlotte.
“It’s the one space that we’ve got where she feels like she belongs,” Larissa said.
Larissa Gardner says Tourette’s camp is the one place her daughter Charlotte feels she belongs. (ABC News: Jerry Rickard)
“She doesn’t feel like she belongs anywhere but here.”
“I like it when other people are not picking on me,” Charlotte said.
“Mostly everybody here has Tourette’s and they know how it feels.
“So they won’t pick on me and won’t stare at me, cause I don’t like to be picked on and stared at.”
‘The stop signs of the brain don’t function’
Robyn Latimer, Tourette Syndrome Association of Australia President, says Tourette’s is more prevalent than people realise. (ABC News: Jerry Rickard)
Tourette’s is a neurological disorder with no cure that can be managed with a combination of medication, therapy and relaxation techniques.
Tourette Syndrome Association of Australia runs the camps and president Robyn Latimer said the disease is more common than people think.
“It’s essentially caused by an excess of a particular neurone chemical and brain chemicals and they jump what’s called synapses in the brain that are the blockers,” Ms Latimer said.
“Essentially the stop signs of the brain don’t function.
“The prevalence rate is 1 per cent of the population and that’s just diagnosed,” she said.
“There are a lot of people out there that are not diagnosed.
“So it’s the prevalence rate and the fact that it’s hugely individual — there are a lot of mixes with other conditions and it’s very complex.
“It’s more than tics.
“The condition itself is not life-threatening (but) the implications and reaction from other people create more complications that can be life-threatening.”
‘Everyone started screaming’
Wilson Hoyle, 23, is mostly good at suppressing his tics.
But he has been knocked out four times by people he has offended.
He even had a close call on the flight up from Melbourne to join the camp.
“We were taking off and as we were taking off I started screaming, ‘The engine’s on fire! The wings on fire!’,” he explained.
“And everyone started screaming saying, ‘Where? Where?’.”
Panic was only prevented by his mother standing up and telling people that her son had Tourette’s.
‘Honestly, Tourette’s is freaking hilarious’
At Tourette’s Camp humour plays a big part in building acceptance of the outbursts of swearing, known as coprolalia, which characterises the tics of about 20 per cent of people with the syndrome.
“In all honesty, Tourette’s is freaking hilarious — it’s funny”, Adam Ladell told 7.30.
Adam has Tourette’s and was a finalist on The Voice in 2016.
“It’s strange, it’s weird, the noises and movements, the faces we pull are absolutely hilarious,” he said.
“As much as it is, underneath the surface a hard thing to deal with, it is funny and I think the best way for your kids to feel comfortable and for you to feel comfortable is know that together you’re both comfortable with Tourette’s.”
At Tourette’s Camp sufferers, their families and friends find that a comfort — one which can be very hard to find in the world outside.
It means the world to 10-year-old Marc Milne who has coprolalia and a message for those who struggle to understand his sometimes vulgar outbursts.
“I’d like them to know… F**k, f**k… that it’s really hard to control,” he said.
“And don’t think they’re being bad.
“If they say you can laugh at their tics, then it’s okay.”