This one-hour session was spearheaded by 19-year-old County College of Morris student Drew Friedrich and his mother, Donna, as well as 13-year-old South Plainfield student Tommy Licato and his mother Karen. Following the PCME format, the Friedrich and Licatos described their experience with Tourette Syndrome at school, at home and in their communities.
For the Friedrichs, this was their second time at Goryeb, having helped the Ethridge family deliver the message at April’s gathering. Like in April, Drew did most of the talking this time, but Donna summed up the importance of the presentation from a personal and medical standpoint.
“I think the presentation is one of the most important things that we do for (NJCTS),” said Donna Friedrich, who has been helping Drew deal with TS since he was diagnosed at age 9. “Giving the Residents practical, real-life experiences with our children and young adults will help them diagnose, treat and care for TS families sooner and in a way that is not generally taught through books or lectures. There is no doubt that finding good medical care from a pediatrician early on in diagnosis can help the whole family understand and deal with the issues that come with having a child with TS and its co-morbidities.”
Usually at PCME trainings, it is the attending doctors, physicians and residents who absorb large amount of information about Tourette Syndrome, especially considering many of them – by their own admission – only spend a chapter or two at most learning about TS while in medical school. But at this training, not only did the medical students and residents take copious notes – Karen Licato did as well.
“I thought the presentation was informative and incredibly therapeutic. It was a win-win. It was beneficial for the residents to hear from the patients directly, as every patient experiences something different,” Karen Licato said. “It was therapeutic for the patients (and parents) to share their stories and feel they are making a difference.”
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 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.
According Goryeb Chief Pediatric Resident Shobhit Jain, those goals not only were met, they were exceeded – with medical students and residents asked numerous questions and received a host of new, valuable information. Said Jain: “Even with the prevalence of TS being so high, not many of us feel very comfortable diagnosing the children of this condition due to the vague manifestations that it can present with. I learned a whole new perspective of the condition, which cannot be described in written words in the books that we spend years reading.”
NJCTS works with hospitals throughout New Jersey and the greater New York and Philadelphia areas to present these trainings. Over the past 18 months, the Center has facilitated trainings at Goryeb twice, Saint Peter’s University Hospital in New Brunswick, Jersey Shore Medical Center in Neptune and Robert Wood Johnson University Hospital in New Brunswick.
Trainings also have been schedule for August 30 at JFK Medical Center in Edison and Jersey Shore Medical Center, as well as Newark Beth Israel Medical Center in Newark on October 24 and Cooper University Hospital in Camden on November 7. More information about the PCME program is available by calling 908-575-7350 or by visiting www.njcts.org.