Ioan's story | Action Medical Research

Ioan's story

Tourette syndrome

“People think Tourette syndrome is just about swearing, but it isn’t,” says Paula, whose 10-year-old son Ioan has the condition. “Ioan does not swear,” she explains. “He makes squeaking noises, shouts out, ‘I’m not a dog!’ and is fixated on the name Bob.”

Aged five, Ioan would make a clicking noise in the back of his throat. “It was an unusual sound but I didn’t think too much about it at the time. He was my first child; I just thought it was a little quirk,” Paula remembers. “Now, looking back, I recognise that it was a tic.”

As Ioan grew older, more tics developed: he would roll his eyes, blink hard, grimace and grind his teeth. “He would lean his head into his shoulder with such a thud that it made him cry,” Paula says.

Ioan is a bright boy who loves swimming, running and making people laugh. But he has also suffered from bullying, with older boys picking on him at school and imitating his tics. And, although still a young child, Ioan is painfully aware of other people’s reactions to his tics.

Paula fears this may lead to social isolation. “Ioan has great friends, but he is very self-conscious when we’re out,” she says. “He can see other children staring at him. He feels it’s easier to stay in.”

Ioan has developed strategies for suppressing his tics but Paula worries about the strain he lives under: “Ioan can hold in his tics all day at school. But then he comes home and has a prolonged ‘tic attack’ on the sofa. It’s heart-breaking.”

Ioan has taken part in a two-year study, funded by Action, into the role of habits in Tourette syndrome, using a specially designed computer game.

This work is vital, Paula feels: “So little is understood about Tourette syndrome, yet it affects one child in 100 and can lead to anxiety and mental health issues in adults. Research like this could help raise awareness and save families from years of anguish. It’s marvellous that it’s happening.”

You can find out how Ioan is getting on over on the Action blog.

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