Edmonton-area siblings living with Tourette's say peers judge, don't understand condition
Published Wednesday, March 6, 2013 4:31PM MST
Last Updated Wednesday, March 6, 2013 6:29PM MST
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.”
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.
With files from Carmen Leibel