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Edmonton Heroes: Amanda & Ryan Caruso Living With Tourette Syndrome

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  • Edmonton Heroes: Amanda & Ryan Caruso Living With Tourette Syndrome

    Edmonton-area siblings living with Tourette's say peers judge, don't understand condition
    CTV Edmonton
    March 6, 2013

    image.jpg
    Amanda Caruso and her brother Ryan have Tourette syndrome.

    Twelve-year-old Amanda was diagnosed at age ten, while 16-year-old Ryan was diagnosed when he was seven.
    The Edmonton-area siblings say the disorder is not only something they can’t control, but add it’s not accepted by others their age - and that's most
    frustrating.

    “Living with Tourette's, it’s pretty tough because most people don’t understand what it’s like with it. We’re just
    like everyone else, but we have some tougher challenges in our life,” Amanda said.

    When they’re at school, the siblings say they try to hold in their vocal tics – that are like outbursts – to avoid
    embarrassment.

    “It’s really hard to control it. I know a lot of people don’t understand. We try not to tic, sometimes it just comes
    out,” Amanda said.

    The siblings say medication also provides some help keeping the tic at bay, but living with the condition has
    been hard.

    “It’s really difficult when someone is judging you for just being you,” Ryan said.
    “People don’t understand what it’s like with it. We focus too hard on trying to hide them that we don’t focus on
    our work,” Amanda said, adding it affects her schooling.

    Canadian clinical guidelines to treat Tourette syndrome
    For the first time, Canadian clinical guidelines have been released to help treat those living with Tourette
    syndrome.

    Dr. Alan Carroll has been working with people living with Tourette's for 30 years.

    He says up until now, treatment practices have been inconsistent.

    “There hasn’t been a clear consensus in North America. I think the Canadians are the first,” Carroll said.
    Carroll was one of 11 Canadian doctors who worked to complete the first clinical guidelines that provide
    evidence-based recommendations to help decide when people need treatment and what treatment would be
    best.

    “I think that’s quite important to emphasize the evidence. People have really looked at all the literature and
    papers out and they have looked at what really helps and what doesn’t help and they have developed a
    scale,” Carroll explained.

    “We decide what approaches have strong recommendations or weak recommendations and then you have the evidence for that whether it’s strong
    evidence or weak evidence. What we’re trying to sort out is the appropriate guidelines or sequence you would have, to approach the treatment of
    Tourette's.”

    Click here for more information on Canadian Guidelines for the Evidence-Based Treatment of Tourette Syndrome.

    The book acts as a guide on how best to treat symptoms associated with Tourette's, such as attention deficit hyperactivity disorder and obsessive
    compulsive disorder.

    Therapy over medication
    Dayna Caruso says Amanda has been testing out other therapies to help with her tics.
    Those therapies are now highlighted in the new guidelines and Dayna is excited to see how those therapies help others struggling with Tourette's.

    “It’s really cool. Amanda’s really able to work towards reversing some of her tic or stopping them by using this,” she said.

    “Now that it’s out in guidelines for all physicians to see, perhaps more people are going to get help that way. I’m kind of excited about that idea without going through medication.”

    It’s progress but for Amanda and Ryan, but in the end – they just want their peers to understand.

    “We just want to be treated normally, to be able to fit in,” Ryan said.

    The 5th annual Trek for Tourette takes place in Edmonton and across Canada on March 24.

    Click here for more information on the walk.

    Click here for more information on the Edmonton Chapter of Tourette Syndrome Foundation of Canada.
    Steve
    TouretteLinks Forum
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