But the information they didn’t have readily available at their fingertips was first-hand experience hearing from people who actually have TS – until Monday, April 9, when they listened to the personal tales of two teenagers as part of the New Jersey Center for Tourette Syndrome and Associated Disorders’ (NJCTS) patient-centered training presentation at Goryeb.
Drew Friedrich, 19, a freshman at the County College of Morris, and Sarah Ethridge, 14, a freshman at Chatham High School, informed the medical residents in attendance – which included a group via teleconference from Overlook Medical Center – about a number of topics, including diagnosis, tics, bullying, schooling and acceptance.
But there was one unexpected topic – suppression of tics for short periods of time– raised by Friedrich that caught several of the eager-to-learn pediatric residents off-guard.
“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.”
Friedrich, who was first diagnosed in the third grade when he was 9, has done this presentation before – taking part in NJCTS’ first patient-centered training at Overlook in 2010. Speaking to doctors this time was easier for him, but his message – and that of his mother, Donna, who accompanied him – was still the same.
“It’s important to listen to kids and hear what they have to say. Even for those who are educated, it’s so important to discover what someone is feeling. The doctors were very willing to listen and hear my experience,”
Ethridge, who plays golf and field hockey at Chatham, also has overcome a lot since being diagnosed with TS in second grade at age 8. The symptoms associated with her OCD have been much more challenging than her motor and vocal tics, and like Friedrich, Ethridge, too, accentuated her struggles with the suppression of tics.
“I was so scared of the embarrassment that I tried to restrain them,” Ethridge said of her tics. “Although my tics may not require much energy, it takes 10 times more energy to hold them in. I would go home and explode after holding them in. If I try to suppress a motor tic, another vocal tic comes out, or vice versa. For me, Tourette is an anxiety disorder. For someone else, it may be a learning disability, and they have to find out what is best for them.”
Mukherjee wasn’t the only resident impressed by the presentations of Friedrich and Ethridge. Near the end of the training, one resident said, “No matter how much you read or hear about Tourette Syndrome, it’s not the same as hearing someone like you come in and talk to us about it.”
Another resident posed this question to Ethridge: “Is there anything you wish your doctor would have done more for you or differently from the beginning?” Mukherjee echoed that query.
“When we rotate through the neurology department, we will see a couple of patients with Tourette, but those sessions are so limited – a brief encounter or medication management – so this gave us first-hand insight into what the diagnosis entails,” she said. “It’s very different hearing them talk about it today.”
NJCTS works with hospitals throughout New Jersey and the greater New York and Philadelphia areas to present trainings for doctors, nurses and other health care providers. In 2011 alone, NJCTS facilitated trainings at Saint Peter’s University Hospital in New Brunswick, Jersey Shore Medical Center in Neptune and Robert Wood Johnson University Hospital in New Brunswick. These educational sessions consist of a one-hour conference in which two or three adolescents with TS, and their parents, describe their experience with the condition at school, at home and in the community.
The presentations focus on the experience of initial diagnosis, on quality of life and on encounters with physicians and the health-care system. The goal of this project is to help physicians enhance their understanding of the perspectives, stresses and needs of patients with neurological disorders and their families and to improve interpersonal and communication skill in patient encounters.
More information about this patient-centered training is available by visiting NJCTS’ Teens4TS blog at http://www.njcts.org/