PITTSBURG — Emily Wachter, at just 16 years old, is taking on a big task to share what Tourette Syndrome is and to clear up misconceptions about it.
Two years ago Emily and her family found out that she has Tourette Syndrome.
According to the Tourette Syndrome Association website, "Tourette Syndrome (TS) is a neurodevelopmental disorder that becomes evident in early childhood or adolescence. It is part of the spectrum of Tic Disorders and is characterized by motor and vocal tics."
An estimated 1 in 100 school-aged children in the United States has Tourette Syndrome (TS) or a related Tic Disorder, which causes them to make sudden uncontrollable movements and sounds called tics, the association said. TS is a lifelong condition affecting all races, ethnicities, and genders. Due to the complexities of the disorder, 50 percent of individuals are going undiagnosed, a release from the TS Association said. "In addition, many children, parents, teachers and even physicians don’t fully understand TS, which can lead to bullying, a lack of community support, an improper diagnosis and a host of other issues that impair the quality of life for someone with TS."
Through a Tourette Association of America’s Youth ambassadorship, Emily received training to learn how to speak publicly about the disorder. On March 5, she shared her personal story with representatives in Washington, D.C. during the Association's National Advocacy Day on Capitol Hill. Emily and one other person spoke to over 200 people at the Congressional Caucus luncheon that day.
"It truly means so much to me that I get to be an ambassador just because by being an ambassador I will be able to teach more people about Tourette and what Tourette is and what it’s like to have Tourette," she said. "So I was wanting to do this anyways, I was going to do this whether I was going to be an ambassador or not. But now that I am an ambassador this is just one more step and one more person or connection that I have that will make it a lot easier for me to get out my message of what Tourette is, and so I think that is really amazing that they have this program to help kids and to help people better understand and to help kids with Tourette fit in better."
Before the training Emily said she had only met one person with TS and that was before she even found out she had the disorder. When she came to Washington D.C., she met many other children who she said shared many experiences.
"I met 37 other kids with Tourette it was so cool to be able to meet all of these other kids that knew what I was going through" she said, adding that what made the meeting even more important to her is that they understood the co-occurring conditions that many people with TS have. "It was just so amazing to connect on so many different levels not only Tourette."
Emily’s symptoms came about suddenly approximately two years ago.
"I had no idea what was going on," she said. "At first it was just facial tics and I was like is this normal? Is this some part of puberty I haven’t heard of? Then I went to church camp in Michigan, that's when my tics started to get more vocal and motor tics and so my arms would kind of fling around. I had a tic where my head would jerk to one side, which is very painful. So it was definitely kind of like all of the sudden and we were ‘like what the heck?’"
It went away by the time she got home from camp but later it came back again. She went to the doctor and he told her that it was Tourette Syndrome. People are born with the syndrome and the symptoms, such as the tics, often show up between the ages of 5 and 17, but can occur any time before and after, Emily said. Some people take medications and there are several relaxing techniques, but there’s no sure cure for TS.
Emily said that having TS is not what is often portrayed on TV.
"A lot of people think of cursing and tics like that and that’s 100 percent not what it is for most people," she said. "That only happens in 10 percent of people and I am one of those, I just happened to fall into that category.
"Even though there are a lot of people like me that have tics — maybe where I say sentences or words — some people only have tics that are just facial tics or just coughing or sneezing."
With colds, influenza and viruses going around, coughing or sneezing tics can be frightening or uncomfortable to some people, Emily said. It’s not a cold, flu or virus — it’s TS.
"You don’t think about it," she said. "They are now being looked at like ‘oh you have some sort of thing’ when really it’s just Tourette and you really wouldn’t have ever known that."
Emily recognized that people don’t meet someone with TS every day and said she understands when people notice and that it was okay to acknowledge tics by looking but does encourage people not to stare.
Sadly, there have been a few times where she has been followed through a store.
"I want to get it out to people, the only reason people are doing those kinds of things is because they don’t understand," Emily said. "My biggest goal is to get it out there so the next group of kids or people who have Tourette won’t have to go through what the groups of kids now are going through."
Emily goes to Pittsburg High School for half days and studies at home through online schooling. She introduces herself at the beginning of the semester and explains what TS is so they will be informed. The majority of students have been kind and understanding of her condition, she said.
"I feel like the biggest thing is that you cannot focus on that small percent of people who just are going to be rude," Emily said. "You have to focus on the big percent of people who are going to be nice and for me my coping skill for Tourette is just laughing at the funny tics."
Emily and her friends giggle at new tics or noises they hear and even give tics nicknames.
"That’s just like our joke, it’s just how I cope with it," she said. "But I feel like for me, just sitting in a corner when I’m tic-ing I don’t know I could ever do that, honestly, I have to laugh at something and I feel like that’s one way to cope with it."
Emily has speeches lined up at civic group meetings to help spread awareness about TS.
"If one person talks to these two people and those two people talks to another two people I feel like that’s what’s so important," she said. "For two people to educate these two people. For everyone to know how to act and treat people with Tourette Syndrome and just to know, it’s not a joke."
People can learn more about TS by visiting the Tourette Association of America website.
Emily gave words of encouragement for other children and adults who have TS and said "even if times are rough or if someone is being mean or something’s happening or if someone doesn’t understand, there’s always going to be 10 more people or 100 more people who do understand and will be nice."