NEW HAVEN, Conn. – Despite being just 14 years old, Tommy Licato has delivered a half-dozen presentations on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS). He has spoken to students, teachers, doctors and residents about what it’s like to live with TS – an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 kids.
But prior to October 8, each of his presentations had taken place at hospitals across New Jersey. On this particular Tuesday, however, Licato was part of a trio invited to speak at one of America’s leading institutions of higher learning – Yale University. Their talk about Patient-Centered Medical Education at the Yale Child Study Center not only was well-received by the nearly 120 faculty and trainees of the Yale School of Medicine, it was lauded and encouraged to be replicated – nationwide.
“In an academic clinical research center – one that is the birthplace of much of the important work into the causes and treatment of TS over the past 40 years – it was very important for clinicians and researchers to hear from the teenagers themselves,” said Dr. Robert King, a Professor of Child Psychiatry at the Yale Child Study Center and a key partner of NJCTS. “There is a lot of excitement here about the thought of the NJCTS Patient-Centered Medical Education program being used as a model with children and families affected by other clinical disorders.”
Patient-Centered Medical Education is a unique education program that provides doctors and physicians in training an opportunity to hear directly from adolescents/young adults with Tourette Syndrome and their families. It fosters an understanding of the perspectives, stresses and needs of families living with TS and associated disorders such as OCD, ADHD and anxiety.
Licato’s experience and resulting confidence was clearly on display as he highlighted how answering doctors’ questions make him feel like what he’s been through – all of his experiences, even the most negative ones – are important and worthy of discussion.
“The most frequent comment I get from doing Patient-Centered Medical Education is that doctors always read about Tourette Syndrome in textbooks, but that hearing from patients in person is a treat and very helpful,” said Licato, a freshman at South Plainfield High School. “And if I can help someone be diagnosed sooner through talking to doctors, somehow, everything I have gone through will become worth it.”
Since its inception in 2010, the Patient-Centered Medical Education program has been presented by NJCTS at more than 15 hospitals in New Jersey.
“It is the goal of the New Jersey Center for Tourette Syndrome & Associated Disorders, through the Patient-Centered Medical Education program, to bring each doctor and resident to a level of understanding about TS so that each of the 1 in 100 kids – such as Tommy Licato – affected by the neurological disorder can be properly diagnosed, treated and someday cured,” NJCTS Executive Director Faith W. Rice said.
For more information about the Patient-Centered Medical Education program, or to schedule it at your location, call 908-575-7350 or visit www.njcts.org.
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