One of the purposes of a wellness fair is to educate the public about conditions and disorders they may not be familiar with.
Kyla Butler, 15, believes she is uniquely qualified to do that.
Butler is a sophomore at Jefferson Township High School and a ski racer who just happens to be dealing with Tourette’s Syndrome.
“I want to help people interact with those with disabilities and disorders,” she said on Saturday, November 16, at the fair at the Senior Citizens Building in Oak Ridge.
One thing she does is explain that she can’t help the tics and hesitations people may notice when they chat with her.
She notes that she has been judged and bullied because people don’t understand Tourette’s, but the bullying has decreased over the years.
It’s not a common condition. About 100,000 Americans have full-blown Tourette’s, but others have a more mild form. According to a medical website, it often starts in childhood and affects more boys than girls. The symptoms may improve with age.
Researchers think there might be a problem with the basal ganglia portion of the brain, which controls body movement. People with family members who have Tourette’s may be more likely to develop it, but family members don’t necessarily have the same symptoms. Tics are the most common symptom.
Butler said her Tourette’s is mild and includes only motor tics. She said she tries to explain what she experiences and how it affects her life. She attended a four-day leadership academy at Rutgers University through the NJ Center for Tourette’s Support.
Her teachers need to know what they can do to make class easier for her, she said. She may need extra time for speaking or tests and is not comfortable reading out loud.
She also helps her classmates understand her tics. She noted many people associate Tourette’s with coprolalia, which is involuntarily uttering curse words, but that is only one symptom and not one she deals with.
Butler’s table at the fair was full of information on other conditions people may not understand, such as mental health issues.
She’s starting to think about college and continuing her advocacy as well as her skiing, soccer, and track.