Mendham, N.J., teenager Emily Carrara has known T.J. Stanley her entire life. But even though the cousins have the same blood running through their veins and have shared laughs, stories, heartaches and other parts of life over the past 18 years, it doesn’t mean they know everything about each other — or at least haven’t known everything all along.
It wasn’t until they were 11 that Stanley, of Basking Ridge, N.J., was diagnosed with Tourette Syndrome – a neurological disorder that affects as many as 1 in 100 people – and before that point, Carrara had no idea her fun-loving, vivacious cousin had something “wrong” with him.
Even more time passed by — until a graduation party for Stanley’s sister Jackie a little more than two years ago — before Carrara truly became aware of just what TS is and how it changes the lives of not only those who have it, but everyone around them.
At that party, Stanley showed Carrara a documentary about his life with TS — appropriately named “TS Has TS” — that the aspiring filmmaker had made and posted on YouTube. After Carrara finished viewing the video, her life was forever altered.
“A couple days after (the party) I got an idea that I wanted to contact someone,” said Carrara, who sent an e-mail to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) right away. “I definitely didn’t know the extent of what his feelings were. I became informed about it, and I just wanted to do something.”
NJCTS partnered with Carrara to found the now annual New Jersey Walks For TS event every November at Borough Park in Mendham, part of a series of efforts by NJCTS to promote and create programs which are by kids and for kids.
One of NJCTS’ most recent program launches was the Teens4TS blog, a resource for teenagers with TS by teenagers with TS. While NJCTS administrates and oversees the blog, the content almost is almost exclusively produced by everyday teenagers from all over the world – including Carrara, Stanley and TS advocates such as Emily Fleischman, New Jersey’s 2010 National Youth Ambassador for the Tourette Syndrome Association.
“I just want to get the message out there that people with Tourette Syndrome are normal, shouldn’t be bullied and should be treated like everyone else,” says Fleischman, 17, of River Dell, N.J., one of a dozen regular teen contributors on Teens4TS.
The teens talk about issues such as initial bullying, diagnosis, getting a diagnosis of TS as a teen and not a child, and talking to friends about the condition. Poetry and videos also have been prominently featured.
Such extraordinary efforts have made the lives of Stanley and other kids with TS a little bit easier.
“Last year at the (New Jersey Walks For TS) walk was the first time I met someone that I didn’t know who had Tourette’s,” said Stanley, a senior at Ridge High School who is one of only three students of which he is aware that has TS. “It was shocking, but it was a really cool experience, to learn that I’m not alone.”
Carrara says there are quite a few students with Tourette in her school and knows there are more in others. The need for greater awareness is huge.
“There’s a lot of kids that I didn’t even know that have it in this town,” Carrara said. “I’ve learned about the different kinds of tics (facial, motor, verbal), and even though I know a lot, there is still so much to learn.”
This guest post is by Jeff Weber, who is the administrator for the New Jersey Center for Tourette Syndrome’s Teens4TS blog at www.njcts.org/teens4ts. Follow him on Twitter at www.twitter.com/Teens4TS.
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