When Amanda Silvers was young, she would hum in the car, like many children do. Unlike other children, however, she wouldn’t stop when her parents tired of the sound and asked her to stop.
It seemed like defiance. But that soon gave way to a realization: Amanda couldn’t stop.
Frustrated, her parents took her to doctor after doctor until ultimately, Silvers was diagnosed with Tourette syndrome, a neurological disorder that affects about one in 100 Americans, according to the National Institute of Neurological Disorders and Stroke, and a number that is on the rise.
Individuals with TS perform involuntary movements and vocalizations, which are referred to as tics, according to the institute.
Tics range from subtle, such as the jerk of a shoulder, a facial grimace, or a grunt, to more severe tics that include movement of the entire body.
Screaming profanities and inappropriate phrases or repeating what other individuals say — which are what many people think of when they hear the word Tourette — are rare, occurring in about 10 percent to 15 percent of individuals with TS, according to the institute.
Males are affected three to four times more often than females.
Silvers, who is eloquent and outspoken about her life with TS, has tics that include humming, clearing her throat, holding her breath and bobbing her head, and they can become more pronounced at the change of seasons or when she is under stress, she said.
She takes medication to manage them, but there is no cure.
She also has had to learn to surround herself with supportive people, Silvers said.
“I’ve had issues with people not understanding Tourette syndrome, but I have a good group of friends who I would not want to be friends with if they didn’t understand; they like me for me, not for my TS,” she said.
Last year Silvers, of East Brunswick, was the first-place recipient of the New Jersey Center for Tourette Syndrome Children’s Scholarship, awarded to a college-bound high school senior from New Jersey living with TS.
There is a first-place winner, second-place winner, and in 2013, there also were 10 honorable mentions. Scholarship winners are chosen based on the applicant’s academic records, dedication to community service, and accomplishments as an individual with TS.
This year, the New Jersey organization is hosting its first NJ Walks for TS at Princeton, to raise money for the scholarship fund. The walk, scheduled for Sunday, will take place at Mercer County Park in West Windsor. Online registration closes today — visit www.njcts.org for more information — but walkers may register in person on Sunday.
Silvers, who is now a freshman at Ithaca College and majoring in physical therapy, has used her diagnosis to help others.
At the age of 15, she became a youth advocate and peer mentor at Robert Wood Johnson University Hospital in New Brunswick, helping children and other teens with TS learn how to live with the disruptions TS can cause.
“My parents have taught me to be outspoken about Tourette syndrome and to never be ashamed,” Silvers said.
NJCTS is celebrating its 10th anniversary as a network for individuals and families affected by Tourette.
The center sponsors visits to schools and hospitals around the state to spread awareness and educate individuals about TS as well as hosting one to two webinars about the disorder a month.
It also organizes support groups for individuals diagnosed with TS and hosts a family retreat weekend every June that about 200 individuals attend.
Funding for the center’s support programs is an ongoing need, said Jeff Weber, program coordinator for NJCTS.
“We get a large amount of our funding from the state, and that continues to be reduced all of the time,” Weber said.
“(Tourette syndrome is) very complex and there is still not a ton of information out there about it, which is why we have events to raise awareness so that people know that this is what Tourette’s is, what it isn’t, and this is why we need attention and support,” he said.
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