Hillsborough Teen Is Removing The Stigma Surrounding Tourette Syndrome

HILLSBOROUGH, NJ — Sree Lakkamraju of Hillsborough was 16 years old when she was diagnosed with Tourette Syndrome.

Now Lakkamraju has turned her diagnosis into a way to help others. And not even a year later she was selected as a Youth Ambassador for the Tourette Association of America.

"What I love about the advocacy in general is the community and the sense of belonging and what you really get out of it," said Lakkamraju to Patch. "I think spreading awareness and education to people is so important."

Lakkamraju said the main reason she chose to become an Ambassador was because most people typically receive their diagnosis when they're very young, around the age of five to seven. Unlike Lakkamraju who received her diagnosis when she was 16.

"That kind of says something, because there was no education like toward the community that I was in, and the doctors and the teachers around me did not see the signs, even though they were really obvious," said Lakkamraju.

Lakkamraju's parents took her to the neurologist a few times leading up to the diagnosis.

"I always used to hate going there, because it was really scary, because I thought there was actually something really wrong with me," said Lakkamraju.

It wasn't until one day when Lakkamraju opened up to one neurologist and described her tics in more detail that everything clicked.

"I never used to describe them too much, because I thought they were embarrassing," said Lakkamraju.

That doctor picked up on the chronic condition and was able to diagnose her in February 2023 around her 16th birthday.

"Everything kind of clicked together," said Lakkamraju.

Due to a limited number of clinicians in the area, Lakkamraju wasn't able to start therapy until the fall.

However, she has noticed a difference. The Rutgers Habit Reversal Therapy helps her with her tics because it trains her brain to have a different response to them.

"I have three or four tics that are pretty bad, so I definitely need help controlling those," said Lakkamraju. "I'll be continuing therapy for probably another year or two, at least."

With the diagnosis, Lakkamraju wasn't feeling happy with herself. Then one day she was speaking to her private school teacher who encouraged Lakkamraju to speak more openly about her Tourette Syndrome.

"I think this is the first person who truly made me feel appreciated regarding Tourette's Syndrome, because I kind of hated it, at first," said Lakkamraju. "I felt a little disgusted, to be honest, when I thought about the word."

Her mindset changed once her teacher told her that her Tourette syndrome is "something I should be proud of."

Lakkamraju ended up joining a New Jersey chapter of Tourette Association of America and became part of their youth council.

Earlier this year Lakkamraju was selected as one of this year’s 64 Youth Ambassadors for the Tourette Association of America. She even shared her personal story with representatives in Washington, D.C. during the Association’s National Advocacy Day on Capitol Hill in March and advocated for public policies and services for people affected by Tourette Syndrome and Tic Disorders.

Through her involvement, Lakkamraju is able to share her personal story and help others in the community who have experienced the same thing as her and avoid a late diagnosis.

She is also part of the NJ Center For Tourette Syndrome.

"It just makes you feel very proud, because you... can really change the outcome for somebody else," said Lakkamraju of her impact as an advocate.

She recalled one time when she spoke to a few kids about her story and afterward "they were so excited and so inspired by the whole thing. They also joined New Jersey Chapter of Tourette Syndrome Advocacy Group, and they're also trained to be advocates now with us," said Lakkamraju. "It's just really cool because when you're doing something and you're inspiring others to do it, you know you're doing something great."

To learn more about Tourettes Syndrome visit tourette.org.

Have a news tip? Email alexis.tarrazi@patch.com.