GWELUP teenager Matt Toms describes Tourette syndrome as a balloon inside his chest that he cannot control that could burst at any time.
Last year the 13-year-old found it difficult to get up and face a school day, but he is now on a mission to raise awareness and understanding about the syndrome.
“I’m hoping to let people know that it’s OK to be out in public and feel confident for all Tourette sufferers,” he said.
Mother Angela Toms said the condition brought on involuntary limb movements, known as tics, and erratic vocalisations that made even simple tasks difficult.
“It’s so frustrating for him, it is phenomenally exhausting; it’s really hard for people to understand how much it stops him from doing everyday tasks,” she said.
“That can be really embarrassing for him to because he is so worried about being judged.
“One of the worst things for him is the vocalisations, they are the hardest thing. He always says things that he doesn’t want to say and phrases and words just come out of his mouth.”
Matt said getting out in the surf brought him a sense of relief.
“The ocean helps me be calm, relaxed and control my tics,” he said.
Angela said Matt started at City of Perth Surf Life Saving Club three years ago at a time when it seemed like her son had “given up”.
“It was really hard because Tourette syndrome is a very private thing; they get so embarrassed, they tend to not want do anything out in public,” she said.
“We had to really push him; sometimes it is like working with someone with chronic anxiety, where you just can’t go out, so it takes a lot of effort to do anything.
“When he’s out in the water it seems to calm the Tourette syndrome or it doesn’t seem to affect him out there.
“It gives him some peace instead of spending every second of every day trying to control the tics.”
Matt recently qualified for the State Surf Lifesaving Championships and was named club champion.
Matt’s sister Madison (16), who attends Carine Senior High School with Matt, said people often made fun of Tourette Syndrome.
“All over Facebook there are videos, people laugh at it; it’s not really fair,” she said.
“People ask me why he does it but it actually pains him to hold in the tics.
“It’s not really him; he just can’t control some of the movements and some of the words that he says.”
Australian Tourette Syndrome Association President Robyn Latimer said a sense of isolation was common among young people with TS.
“There is a huge amount of misunderstanding, largely due to whenever it is portrayed in movies there is always a sensationalised version about the swearing and social taboo words, to the extent where many people think that is what TS is,” she said.
“Only 10 per cent or less ever have that tic, so it’s quite a distortion of the reality and that makes it very difficult for families when children are diagnosed, because that is the image they have.”
Mrs Toms said diagnosis of TS was a struggle and more support was needed for families and children living with the syndrome.
“It took us a long time. The problem with getting diagnosis in Perth is there is a very short supply of specialists and it’s really hard to get in to see a specialist with long waiting lists for kids,” she said.
Friend and neighbour Marie Moore noticed the family’s struggle to deal with the misunderstood condition and organised ‘Matts Trek 4 TS’, a fundraiser to raise awareness of the syndrome on May 15 at Trigg Beach.
National Tourette Syndrome Awareness Week runs from May 8-14.