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Learning to live with Tourette syndrome

Trek for Tourette is important to young man who hopes to spread the word

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Evan Loewen has come a long way since being diagnosed with Tourette syndrome 18 months ago.

Now he hopes the community will join him at an upcoming event to help raise awareness and funds for programming for individuals living with the disease. To date, there is no known cure.

Hosted by the Winnipeg Chapter of the Tourette Syndrome Association of Canada, the 5th Annual Trek for Tourette will be held on Sun., March 24 at the Duck Pond in Assiniboine Park. The organization has partnered with the Running Room and there will be a 10 km run at 10 a.m. and a 5 km run and trek at 10:30 a.m. Winnipeg Blue Bombers Buck Pierce and Kito Poblah will be there as ambassadors.

Eight-year-old Loewen was eventually diagnosed with Tourette syndrome – a neurological disorder characterized by symptoms including involuntary, rapid, sudden movements (tics) or vocalizations that occur repeatedly – after his parents noticed him sniffing and throat clearing over a period of time.

"We noticed it at quiet times, when he was in bed and we were watching TV or when we were driving. He also had strep throat three times, but the doctor referred us to be assessed for Tourette syndrome," said Evan’s mom, Shari, noting he also "dragged his body" at times and that she expects the frequency of his tics to increase and peak between 10 and 12.

For the past year-and-a-half, the Hastings School student has been visiting the Tourette Syndrome Service clinic, which is part of the Child and Adult Mental Health Program at St. Boniface General Hospital.

Shari said treatment from health care professionals such as Dr. Layna Penner and nurse Wanda Grift have been life-changing for Evan.

She also praised the staff and students at Hastings School, including his teacher, Allen Vilar, for increasing awareness and education about Tourette syndrome throughout the school year. And then there was a friend who came to Evan’s rescue during a bullying incident.

"I was playing with someone and he tried to hurt me, but my friend stood up for me," Evan said.

With the help of medication and his support network, Evan has come to terms with his condition and now wants to raise awareness about Tourette syndrome and encourage community members to step up and show support, as well as help change a few misconceptions, Shari said.

"The media have been known to blow things up and focus on the extreme end of the spectrum and the swearing," Shari said. "He is just an average kid with a moderate form of the condition that does these movements. He loves hockey and video games."

"When he was first diagnosed, he didn’t want to talk about it and just shut down. But he’s tried to embrace it and, I think, he’s become proud out of all this because it’s part of who he is, even though it doesn’t define him. Now Evan wants to be open and share, so that’s huge."

Dayna Lalchun, a WCTSFC board member, said the earlier parents or caregivers can detect early warning signs of Tourette syndrome, the better.

"This makes it easier for your child to understand, helps build coping techniques and self-confidence," said Lalchun, whose son, Keaton, has Tourette syndrome.

"Also, they are not doing it to bother people or for attention, so they need to be given the benefit of the doubt."

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Twitter: @lanceWPG

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