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Understanding Tourette Syndrome

Maui boy helps dispel misconceptions about a complex disorder.

October 1, 2009
Crissa Hiranaga

At age seven, Pezzillo’s parents noticed that he was exhibiting unusual behaviors such as repeatedly sniffing and blinking. When symptoms extended to head nodding and shoulder rolling, Pezzillo’s mother said they started researching and ended up with a diagnosis of Tourette Syndrome.

“From day one,” Pezzillo’s mother, Susannah Christy, said, “we decided that there were two ways we could deal with this. We could sweep it under the rug or we could be open about it. We chose to be very open and to arm ourselves with as much knowledge as we possibly could.”

Pezzillo and Christy garnered much of their knowledge from the National Tourette Syndrome Association (TSA). They learned that Tourette Syndrome is a neurological disorder marked by involuntary body and vocal movements called “tics” that affects a conservative estimate of 200,000 Americans. “[TS is caused by an] imbalance of serotonin and dopamine,” explained Pezzillo. “Most people have a stop sign in their brain telling them when to make noises or snap their fingers, for example. People with Tourette Syndrome don’t have that stop sign.”

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Zach Pezzillo’s mission is to raise awareness about Tourette Syndrome.

Contrary to what the media usually portrays, the uncontrollable use of obscene language (called “coprolalia”) is not typical of the disorder.

“There are many misconceptions about Tourette Syndrome,” explained Pezzillo. “When the media shows Tourette Syndrome, they show people yelling out profanities a lot. Actually, a very tiny percentage of people with Tourette Syndrome have coprolalia. The media has latched onto that because it is the most dramatic form of Tourette Syndrome. It’s often viewed as something funny… and that’s very hurtful for these kids.”

The candid approach that Pezzillo and his family have lived by has fostered an exceptional perspective for Pezzillo, and it has manifested in him taking a proactive lead in educating his peers and community through talks at schools and civic groups.

“Having Tourette Syndrome has given me the unique ability to understand what it is like to be different and to have people view me differently,” said Pezzillo. “It has made me more committed to helping others who have disabilities.”

Recently, Pezzillo was inspired to take his work to the next level when he saw a video presentation by Jen Zwilling, founder of the Youth Ambassador program, on the TSA Website.

“I wanted to do the same kind of thing here in Hawai‘i,” he said. Selected as the Hawai‘i representative, Pezzillo headed to Washington, D.C., last March to join 20 other teens from across the nation in the training to become a youth ambassador.

In D.C., TSA supplied Pezzillo with materials to incorporate into his talks about Tourette Syndrome. “The organization really wants to make sure that the information given is very accurate and very specific,” Christy said. “So they encourage the kids to tell their own story and to present all the accurate information.” Pezzillo said that it helps to do a presentation at the beginning of the school year. “The more people you educate, the more understanding there is.”

Basing his talks in the truth of his own experience, Pezzillo can explain to his peers in his own words what it’s like to have a tic, for example. “It feels like trying to hold back a sneeze or not being able to scratch an itch… It’s possible to suppress tics for a little while, but then they come back even worse.”

Pezzillo also stressed that Tourette Syndrome is not a laughing matter. “You wouldn’t go out and make fun of someone with asthma, for example, so why make fun of someone with TS?”

The training program also included a “Trip to the Hill” for the Youth Ambassadors to lobby for a bill to allocate funds for education and research for Tourette Syndrome. Pezzillo even met with U.S. Representatives Neil Abercrombie and Mazie Hirono, enabling him to share his story with Hawai‘i’s elected local officials. “It was a really cool experience,” said Pezzillo.

Pezzillo is excited to put his Youth Ambassador training into action. “In addition to my presentations, I hope to start a support group for kids and families affected by Tourette Syndrome,” he said. “I do the work I do to get rid of misconceptions and to raise awareness about Tourette Syndrome so that people know what it actually is. Also, I do it to spread awareness for anyone who’s different. If you have something like Tourette Syndrome, it’s not your fault. It’s just there.”



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