Drew Friedrich and Sarah Ethridge had a lot to say at the New Jersey Center for Tourette Syndrome’s patient-centered training April 9 at Goryeb Children’s Hospital in Morristown, N.J. And the pediatric residents to whom they spoke absorbed every word they spoke.
The packed room of pediatric residents learned more about Tourette Syndrome in 1 hour than they did during their entire time in medical school or during on-the-job experience. NJCTS’ patient-centered trainings are, simply put, THAT effective. But don’t take our word for it. Listen to what the chief pediatric resident had to say:
“I didn’t realize that you could actually suppress the impulses of the tics. That was interesting information for me,” said Angela Mukherjee, the chief pediatric resident at Goryeb. “I think we got a really good insight into how Tourette affects children on a daily basis and the struggles that they encounter. In the textbook, we learned what Tourette is and how to treat it, but it’s different in person. It was great. It was really educational.”
NJCTS’ story about the training can be read by clicking here, but we at Teens4TS would like to provide you with some exclusive behind-the-scenes quotes and information!
Here are some of the things Drew, 19, a freshman at the County College of Morris, said to the panel of pediatric residents, as well as some facts pertaining to Drew:
- Drew is part of the Campus Christian Fellowship group at County College of Morris, where he’s the vice president. The group has “really allowed me to come into my own. All of my friends accept me for who I am. Tourette doesn’t matter to them.”
- Drew works at Quick Chek, and one of his tics — jumping up on one foot — is quite visible there. “You can’t explain to every single customer what that is and what Tourette is. Some people stare, and some ask questions, but in general, people who are older seem to be more accepting of it.”
- Drew’s mother, Donna, accompanied him to the patient-centered training. “My family is incredibly supportive. My outer family doesn’t believe I have Tourette and is in denial, but overall I have been blessed tremendously.”
- One of the pediatric residents asked Drew what part of having Tourette is the most difficult. His answer was almost immediate: “Suppressing is where you hold in Tourette, and it’s very bad for you, but most kids with it can do it for up to 7 hours, which is basically a whole school day. I have tried not to. I say to myself, ‘I don’t care who knows or sees that I have Tourette.’ ” (NOTE: Not everyone can suppress their tics for 7 hours. In fact, most can’t. Some can’t do it at all, while others can do it anywhere from a couple of minutes at a time to a couple of hours.)
- Aside from suppression, Drew talked a bit about his other tics. “My worst tic is having to run to a certain point and hold my breath until I get there. And sometimes that can be up to 50 feet.”
- Sarah’s Tourette ebbs and flows, and right now, she’s “in the middle of a rough patch.”
- Sarah plays golf — she came to the training dressed in her golf uniform, as she had a tournaments immediately after — and field hockey (she’s a starting midfielder for the freshmen team). Sarah also performs theater — not letting her TS inhibit her activity one bit.
- Sarah’s first motor tic came when she was reading a book. “I used to crane my neck, which I didn’t notice at first. Now I sniffle, blink and make squeaking noises.”
- Sarah’s Tourette is now mild, but she has a co-morbidity of OCD that is strong. “I didn’t try to seek help for it. I have a deathly fear of throwing up and dying, so I started creating a rulebook at age 6. I had to touch a table 6 times each day or else I thought I would throw up and die. I couldn’t tell my parents. My rulebook said that if I told my parents, I would get sick and die.”
- When Sarah got her TS diagnosis in fifth grade, she finally understood why she was the way she was after having it for four years. “To have an answer and an understanding that I wasn’t strange or had anything wrong with me, that alone was so calming and relaxing for me. It took all the stress off my shoulders. School turned for the better. All I remember was the kids in school (before that) turning around and staring me. They didn’t know why. I didn’t know why. In fifth grade, that was breaking point.”
- Stress and excitement amp up Sarah’s Tourette. “When the kids started reacting negatively to it, I knew it became necessary for my mom to step in because I didn’t know what to do. My mom gave a presentation to my class at age 10 (fifth grade). That kids could understand even basic knowledge of it instead of just shoving it under the rug made me feel so much better. Now I am talking on my own to my teachers and classes. I am outspoken and I don’t let Tourette’s define me”
- Sarah’s mission and her primary to the pediatric residents was clear: “Tourette doesn’t inhibit me from doing anything I want to do. If my peers don’t understand or accept me, then it’s their loss because they are missing out on a pretty incredible person. I want everyone to have an understanding of Tourette so they know how to accommodate me best.”
- Sarah is the 2012 New Jersey Tourette Syndrome Association Youth Ambassador, and she also will be singing at the first annual statewide Tourette Syndrome Awareness Day on Sunday, April 29, at TD Bank Ballpark in Bridgewater.