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.
The New Jersey Center for Tourette Syndrome (NJCTS) is proud to congratulate Tommy Licato, recognized by WMGQ 98.3 as a “Kid who Makes Magic.”
The radio station honors local youth who are making a difference in their community. Licato, of South Plainfield, has demonstrated a sincere desire to use his experiences living with Tourette Syndrome (TS) to help others. As an New Jersey Center for Tourette Syndrome Youth Advocate, Tommy has been trained to lead peer in-services, present medical training alongside experts in the treatment of TS and mentor younger kids facing a new diagnosis.
In addition, Licato has spent countless hours fundraising and performing acts of advocacy to bring awareness and support to TS, a neurological disorder characterized by involuntary sounds or movements known as tics.
“I choose to educate people about TS because I don’t want people going through the bad experiences I did,” said Licato, who suffered bullying from classmates who didn’t understand his disorder, “Educating my peers changed my life for the better and I want to give another person with TS that same feeling.”
“Tommy has been a great part of what we do,” said NJCTS Executive Director Faith W. Rice, “We’re very proud of him and the good work he is doing on behalf of the 1 in 100 children in NJ living with this disorder.”
Licato was nominated by Nancy Toeltl, a lifelong family friend. He and the other children and teens selected as Magic 98.3′s “Kids who Make Magic” will receive a special gift and enjoy a night of fun at iPlay America in Freehold.
Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at firstname.lastname@example.org. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!
Steff’s Tourette Syndrome Story
Q: What is your name & how old are you?
A: Steff & 23.
Q: How long have you had Tourettes?
A: I was diagnosed when I was 7.
Q: What kind of tics do you have?
A: Most facial, some arm spasm like twitches .. when I type, like now…my hands twitch alot. When there is something wrong(toothache, knee pain, headache) my tics localize to that area. I’ve had a wink that I have had since I was diagnosed. That gets interesting sometimes.
Q: Do you have any associated conditions?
A: I have OCD, am mildly BiPolar, & have anxiety.
Q:What’s life like living with TS?
A: It’s life. I take each day for what it is & hope tomorow will be good too. My tics are worse at night, or when I am stressing and my anxiety picks up, other than that, I usually get by okay.
Q: What advice can you give others that are newly diagnosed?
A: Live your life! I am a regular person, I just move around more than others. I hate people on any TS site that hate the world. Yes, its rough, but it’s amazing also.
Q: Whats the hardest thing about having TS?
A: Meeting new people or getting a new job. People are so quick to judge. Seeing other people get down on themselves because of the condition.
Q: What do you think others should know about TS?
A: I am just like you, I just move more. You cant catch it, I cant help it, get over it.
Q: What are your strengths and what do you like to do?
A: I clean, alot. I also like to exercise. Not just run, but actually exercise. I also do alot with my dogs.
Q: What are your dreams & goals in life?
A: To help others with TS. To have a lovely family, with kids. They may or may not be born with Tourettes. But we will take that journey in stride when it comes.
A lot of people either haven’t, or have only heard stereotyped references to it like “the swearing disorder.” Tourette Syndrome (TS) is actually a neurological disorder that is characterized by tics, which are uncontrollable movements or vocalizations.
TS is often judged and misunderstood because of the stigmas that have been created by the media and and a general lack of information about the disorder publicly. I intend to change that.
Through the power of film, What Makes Us Tic is an insightful documentary that aims to promote Tourette Syndrome awareness in a positive way, and give a fresh perspective of what living with this neurological disorder is really like.
It will also provide resources for individuals living with the disorder, as well as their parents, teachers, friends, co-workers, or anyone else who may be affected by their TS. Butultimately this film really is for anyone who wants to learn more about Tourette Syndrome!
My name is Bella Marangoni, and I am a Canadian filmmaker and a high school student. I was diagnosed with Tourette Syndrome seven years ago, and ever since my diagnosis, I have been driven to change the way that people think about Tourette Syndrome and mental health in general.Continue reading →
Hey everyone! I have decided to make a blog called “10 Ways to Respect Children and Adults With Tourette’s Syndrome”.
I feel like it’s not just important to tell others what shouldn’t be said, but that it’s also very important to follow this up with things that should be said and things that are helpful and supportive. This is important so that others without Tourette’s don’t shy away from talking about it all together, but instead know ways they can acknowledge Tourette’s by being helpful, supportive and accepting without being offensive.
So counting down toward No. 1, here is No. 8:
Caring enough to educate yourself about what Tourette’s Syndrome is.
From Jocelyn, a mother of a child living with Tourette’s Syndrome:
This is my 12-year-old son. He was diagnosed when he was in 3rd grade. We live in a small town in Texas. Hunter at that time had some very violent neck jerk tics. He was in a lot of pain. The doctors had him on some heavy-duty meds that made him so very tired. He slept during PE, recess and free periods at school. They allowed him to sleep in the nurse’s office. Hunter maintained his A-honor roll status throughout all of this. Our school administrators sought out help to understand Hunter and his new needs. They found speakers to come to our school and explain to Hunter’s classmates what Tourette Syndrome was and how it affected Hunter. They fully embraced Hunter.
I am forever grateful to our school for this. Our church raised money during VBS and gave it to the TSA. All VBS shirts had a teal ribbon printed on them. Our community brought awareness about TS, and awareness brings education, and education helps eliminate judgement. For this, I am grateful. It has made life so much easier for Hunter. We have had teachers attended workshops to understand kids with TS, ADHD, OCD and other co-morbids. They wanted to do this. They sought out these workshops.
Look for No. 7 tomorrow. And in case you missed the ones that came before, here’s a list: