Teens with Tourette Syndrome and Specialists Address Critical Knowledge Gap

By
 Physicians spend a lot of time in training- but when it comes to understanding the challenges of Tourette Syndrome, there’s a "gap", according to Tolga Taneli, M.D. The psychiatrist specializes in the neurological disorder characterized by involuntary sounds or movements known as tics and he partners with the New Jersey Center for Tourette Syndrome (NJCTS) to educate healthcare professionals.
"Tourette Syndrome is diagnosed too late- from its first symptoms to diagnosis sometimes takes a decade or more," said Dr. Taneli, "There is a training gap in physicians to make them able to recognize early symptoms."
He emphases a "critical" need to train first-line physicians like family practitioners, pediatricians and internists- doctors who are more likely to encounter a patient before they seek the help of a specialist. 
Because of its complex physical and cognitive manifestations, understanding Tourette Syndrome (TS) goes well beyond tics.  Since 2011, NJCTS has delivered Patient-Centered Medical Education presentations  to hospitals throughout New Jersey and beyond.  The program consists of a specialist with TS expertise and teen advocates, living with TS,  who are able to convey the emotional toll  and communication challenges in a way that transcends clinical terms.  
This week, Dr. Taneli was joined by Michael Hayden of Hillsdale. The teen knows sharing his story is important to help a new generation of kids facing a TS diagnosis. 
"I hope [the doctors] have a better understanding of how to diagnose the disorder soon after symptoms are reported," said Hayden, "Kids deserve that so they can deal with the stress that accompanies TS." 
Stress, particularly for people living with a neurological disorder, takes many forms. Hayden explained how TS shapes his daily perspective:
"My tics go way up when school starts. Aside from the work aspect of school, the social part is stressful, too.
"Some peers do not exactly understand Tourette, which can result in a number of things- the worst of which is bullying. Bullying is amazingly stressful…but educating the bully on what Tourette is has worked for me in the past. Other stressors vary from person to person." 
 Dr. Taneli recognizes the impact of having teens explain the human toll of TS. 
"The teen advocates are well-received and give a good sense of what the disorder is beyond what is described in medical books- it gets the most praise," he said.
Making an impact today, according to Dr. Taneli, is necessary for improving the quality of care and proficient diagnosis for children and families in the future.
"[The impact from each presentation] will be seen years from now in how it impacts the doctors’ ability to diagnose TS," said Dr. Taneli.
Hayden is hopeful that his participation in the NJCTS Patient-Centered Medical Education Program will increase compassion and commitment to helping kids with TS.
"If you do not have a good doctor that you are comfortable around, you are really not going to get anywhere with your TS," he said, "I cannot stress how important this is." 
For more information on the medical outreach programs of NJCTS, call 908-575-7350 or visit www.njcts.org