Pittsburg teen to advocate for people with Tourette Syndrome at nation’s capital

16-year-old Emily Wachter chosen as Tourette Association of America youth ambassador

PITTSBURG, Kan. – Since she was little, Pittsburg resident Emily Wachter has had to deal with more than most people should have to.

“Anxiety and attention problems in grade school, and then she went to middle school, it became evident that she had more mental health issues that we were doctoring for,” says Shauna Rooks, Emily’s mom.

Then, when she was 14, that started to turn into uncontrollable movements, and progressed to vocal tics.

“At first I only had facial tics. And then over the summer of my Sophomore year into my Junior year, I went from ticcing one to two times a day, to ticcing almost every two seconds,” says Watcher. “When you just have, when you just have a random squawk throughout the day and everybody just kind of looks over at you, it’s kind of weird.”

Video she made in August, 2019 to tell her peers about her tics. (Story continues after video)

“She couldn’t even breathe she was ticcing so much. Like, every breath she would breathe out it would be like a noise that she was making. It was so scary,” says Rooks. “Finally went to her pediatrician, and at that moment when she told us, it was last summer, when she told us, ‘Yeah, I think she has Tourette’s. I would really like to refer you to a neurologist.’ That was so wonderful actually just that someone, you know, said yes, here is something that you actually, I can define.”

According to the CDC, Tourette Syndrome is a condition of the nervous system that causes people to have tics. “Having tics is a little bit like having hiccups. Even though you might not want to hiccup, your body does it anyway. Sometimes people can stop themselves from doing a certain tic for awhile, but it’s hard. Eventually the person has to do the tic.” — CDC.org.

Data from the CDC shows that in the United States, 1 out of every 360 children ages 6 through 17  have been diagnosed with Tourette Syndrome.

Emily is now on medication that helps reduce the number of tics she has a day, and leads a pretty normal life. She’s also trying to let others with Tourette’s know they don’t have to let the condition define them.

Update she posted in September 2019 after being diagnosed with Taurette Syndrome. (Story continues after video)

“I think it’s very important to just go with it and be okay with that, because if you’re not, then that I feel like can just ruin everything for you, says Wachter. “Like, it can be a disability or it can not be a disability. And that’s really up to you.”

She’s going to get to spread that message and advocate for others in a big way next week.

She will be going to the nation’s capital as a youth ambassador for the Tourette Association of America (TAA), with the goal of educating lawmakers and raising awareness.

“We got the notice that I had become one, and so it was just really amazing and we were so excited. My mom was crying, we were so excited,” says Wachter.

She’ll be one of 37 Youth Ambassadors from around the country on capital hill during TAA’s advocacy day. And on March 5th, she will be the only youth ambassador to address congress during the Congressional Caucus Luncheon, telling them her personal story and pushing for more awareness.

“I could not be more proud of her for wanting to get the message out there and tell folks., and yeah, could not make a mother more proud,” says Rooks.

“If you have a bad attitude about it, then you’re not gonna get very far. But if you have a good attitude, you can get so far and you can do so many good things. And I just, I wanna show people that,” says Wachter.

Emily and her mom will be leaving for Washington D.C. this Saturday, with plans to go to an ambassador training before the advocacy day.

If you want to learn more about Tourette Syndrome, click here.