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Frome man understanding Tourette’s – with a little help from his friends…

Brent Zilwood, Pete Bennett and Tom Carpenter

Brent Zilwood, Pete Bennett and Tom Carpenter

A young man from Frome has enlisted the help of ‘Big Brother winner Pete Bennett to raise awareness of Tourette’s, the often misunderstood condition they both share.

Tom Carpenter, 19, was diagnosed with the syndrome when he was 13 after developing a tic – an involuntary movement – a common symptom of Tourette’s. As he grew older, Tom found singing helped him control his tics and, ultimately, the condition. He now wants to showcase his and others’ talents in an event aimed at raising understanding of the condition.

Tom is working with the national charity Fixers which supports young people aged 16-25 to tackle any issue that matters to them, however they choose. A report about his Fixers campaign featured on ITV News West Country on Thursday 9th January.

Tom can’t always control the movements and noises he makes which can cause him embarrassment in public. He said, “When I was about 12 or 13 it felt as if I had a ball in my head, and it was really painful and I had to tic to get it out. This soon developed and got worse.

“A tic is an involuntary movement or noise that you make. For me personally, I do very small things. It’s kind of like having hiccoughs. When I’m out in public, I try to suppress it so much but it causes pain. There are times when it’s just uncontrollable.

“I think everyone with Tourette’s at some point feels embarrassed about having the condition.”

Tom is using his performance event to increase understanding of Tourette’s while also showcasing his talents. In preparation, Tom gained advice from Pete Bennett, a former ‘Big Brother’ winner and Brent Zillwood, a star of Channel 4 show the ‘The Undateables’, both of whom have Tourette’s. They are due to attend Tom’s even at the Westlands Centre in Yeovil on Saturday 18th January from 7.00pm.

Tom said, “I would say that singing is my cure. I’m always singing, and it works as a way of suppressing my Tourette’s I suppose.

“I hope that by holding my event and showing that I have the confidence to work on this project, it will show people that you can easily get up and do something with your life no matter what it has given you.”

Chief executive of Tourette’s Action, Suzanne Dobson, supports Tom and feels there is not enough support for those with the condition. She said, “We have GPs who rule out Tourette’s because someone isn’t swearing. As a result, people aren’t being referred to specialist clinics for diagnosis and that’s really hard on families.

“The fact that young people like Tom are taking this into their own hands, to explain their symptoms, is a huge boost for the whole community.”

Fixers works with young people across the UK. Each Fixer is supported to create the resources they need to make their chosen project a success, with creative help from media professionals to make their own promotional material, such as films, websites or print work.

Fixers has already supported more than 10,400 young people across the UK to have an authentic voice in their community. Young people have campaigned on issues with Fixers as diverse as cyber-bullying, self-harm, suicide and the need for more random acts of kindness.

Fixers aims to work with over 70,000 young people aged 16 to 25 by 2020 to help them to take action and tackle the issues they feel strongly about.  Visit www.fixers.org.uk for more information.

Above: Brent Zilwood, Pete Bennett and Tom Carpenter

 

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