EDITOR’S NOTE: The following story first appeared on the websites of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) and the New Brunswick Patch.
When it comes to Tourette Syndrome, pediatricians often state that families bypass them and go straight to specialists for an opinion and diagnosis. That assertion was a hot topic during NJCTS’ Patient-Centered Medical Education program presentation on November 12 for 30 pediatric and family practice resident students at the Bristol-Myers Squibb Children’s Hospital in New Brunswick.
The discussion, started by 17-year-old teen advocate and presenter Grace Hawruk and her mother, Kelly, led to a question by one of the residents that is one of the reasons why NJCTS created the Patient-Centered Medical Education program:
So as pediatricians and general practitioners, what is our role when families return to us?
Hawruk’s story about what it’s like to live with Tourette Syndrome – a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children and teenagers – at school, at home and in the community took care of the answer.
“When I was first diagnosed, my parents were so surprised by the diagnosis at first they decided not to share the diagnosis with me,” said Hawruk, a junior at DePaul Catholic High School who hails from Butler. “I was upset that no one told me about TS, and I wish that my doctor would have referred me to a therapist so I could talk to someone about my tics and squeaks.”
At that point, the residents in attendance bandied about ways to make sure families have all the resources needed to move forward with treatment, including referrals to mental health providers for family or individual therapy. To aid in that discussion, the residents posed a few questions to Hawruk, receiving the following answers:
- Do you inform your teachers each year about TS? “In my school, each teacher distributes a questionnaire at the beginning of the school year in order to get to know the students in class. I always mention that I have TS and would appreciate specific accommodations such as extra time taking exams. Some teachers are receptive and supportive.” One of Hawruk’s teachers, Spanish instructor Stacey Gottesman, received a 2012 Educator of the Year Award from NJCTS for her exceptional work with Hawruk.
- Is there a time when you felt it was a mental health diagnosis and not a neurological disorder? “No, my doctor was very clear that it was a tic disorder or TS.”
- What did the tics feel like before medication? “I take Orap (Pimozide), and it has helped me greatly. Before, my tics were distracting and made it difficult to concentrate in class. Some tics were so painful that I was sore and in pain by the end of the day.”
- What is it that you expect from your doctors, and can you share with us how to approach a patient with TS? “My doctor speaks to me like an adult when discussing treatment options, and I really appreciate that. TS patients are no different than any other patient: We want to be listened to, understood and to be a partner in our care.”
Many of these resident doctors were absorbing specific information about TS for the first time. Most doctors’ educational experience with TS comes in the form of one or two chapters’ worth exposure in medical school books. Hawruk’s presentation focused on the experience of initial diagnosis, on quality of life and on encounters with physicians and the health-care system.
The goal of the Patient-Centered Medical Education program is to help resident physicians enhance their understanding of the perspectives, stresses and needs of patients with neurological disorders such as TS – and their families – to improve patient encounters. NJCTS works with hospitals throughout New Jersey and the greater New York and Philadelphia areas to present these trainings. Over the past year, the Center has facilitated presentations at:
- Robert Wood Johnson University Hospital in New Brunswick
- Overlook Medical Center in Summit
- JFK Medical Center in Edison
- Goryeb Children’s Hospital in Morristown
- Saint Peter’s University Hospital in New Brunswick
- Jersey Shore Medical Center in Neptune
- Newark Beth Israel Medical Center in Newark
- Cooper University Hospital in Camden.
The next presentation will take place Friday, December 28, at CentraState Medical Center in Freehold. More information is available by calling 908-575-7350 or by visiting www.njcts.org.