South Jersey teens with Tourette Syndrome train as youth leaders

NJCTS Youth Development Coordinator Melissa Fowler, M.Ed., leads South Jersey teens in leadership training at Virtua Health and Wellness Center in Voorhees on January 31.

Teens in South Jersey are ready to reach out and help peers and health-care professionals understand the complexities of life with Tourette Syndrome (TS).

TS is a neurological disorder characterized by involuntary sounds or movements known as tics. In addition, the majority of people with TS also have an accompanying disorder like ADHD, OCD, depression or anxiety. As many as 1 in 100 Americans show symptoms of TS, but TS is often misdiagnosed and misunderstood by the medical community.  

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is working to combat stigma and improve diagnosis through its Education Outreach Program.

“People living with a neurological disorder understand the world in a very unique way,” said Faith W. Rice, NJCTS executive director, “They can describe life with TS in ways that are having a profound effect on the community, healthcare providers, peers and educators – putting a face on an often misunderstood disorder.”

On January 31, 10 local teens and their families gathered at the Virtua Health and Wellness Center in Voorhees for an NJCTS Youth Advocate training session.

“There are families in this part of the state who are struggling without the proper diagnosis and appropriate treatments,” said Rice, “The teens we work with, because of their challenges, have an understanding and compassion far beyond their years.”

The goal is to produce teen advocates who will represent NJCTS in peer in-service trainings at local schools and will present information about TS to health-care professionals. The NJCTS Patient-Centered Education Program trains Youth Advocates to attend hospital grand rounds sessions and educate resident physicians on how to identify and recognize patients with TS.

“I now feel like I have the power to help people with TS on a larger scale,” said one participant, who chose to remain anonymous. “The training helped me realize how much more I can be doing.”

“These teens are uniquely talented, poised and capable of delivering a message that is already making difference across our state,” said Rice, “Our hope is that we will contribute to more accurate diagnosis and a safer environment for kids who are living with TS and other neurological disorders.”

To learn more about Tourette Syndrome, and the programs and services of NJCTS, visit www.njcts.org or call 908-575-7350.

Haddon Township (N.J.) High School students learn about Tourette Syndrome

Faculty members of Haddon Township High School and student members of the school’s Psychology Club devoted time on February 2 to learn about Tourette Syndrome.

Known also as TS, Tourette Syndrome is a neurological disorder characterized by uncontrollable sounds and movements known as tics. Even though as many as 1 in 100 Americans show symptoms of the disorder, it’s still frequently misdiagnosed and misunderstood.

The New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) Education Outreach Program offers school in-service presentations for faculty and students. For educators, the focus is on identifying and accommodating students with TS and its co-occurring disorders including ADHD, OCD, depression and anxiety. Students are given a lesson in acceptance, anti-bullying and empowerment.

NJCTS Executive Director Faith W. Rice is grateful for the invitations to present at schools throughout the state. “Awareness and training go a long way in creating understanding of Tourette Syndrome and compassion for those who are living with it,” she said.

“Even if a teacher or classmate hasn’t met a student with TS yet, chances are likely that they soon will,” added Rice. “Our presentations are taking away the stigma of this disorder, and by doing we’re making schools a safer place for kids with TS and other neurological disorders.”

NJCTS School In-Service presentations are delivered by master’s level educators with (often personal) experience assisting students with Tourette Syndrome. For more information about the Education Outreach Program, or how to arrange a presentation for your school or club, visit www.njcts.org or call 908-575-7350.

I SAID YES!

Last night the guy I have been going on dates with asked me if I would like to go out with him officially. I said yes! :)

So now I can say that we’re officially going out and that for now I am no longer single. I like so much about him. I really like how open he is with me and that he is not afraid to show me who he truly is. I also really like his personality in general and how he is a really great conversationalist.

We always have something to talk about and it’s always engaging and thought provoking to be around him. I like that he wants to spend time getting to know me and he really seems to like me. He gives me so many complements and tells me how cute I am, how much he likes spending time with me, and how happy he is that he met me.

Today he opened up to me about some things that were more on the personal side, and even though I was hesitant to, I opened up to him more too. I told me that I have sensory issues and OCD traits. He seemed really OK with it and didn’t seem to think much of it at all. It didn’t seem to affect how he feels about me and after I told him that he asked me to get ice cream later tonight and hang out more.

This gives me more confidence that if I told him about my tics, it wouldn’t affect how he feels about me either. There is still that nagging thought in the back of my head though, that fear that he will not accept me. I know it’s just the fear that has been instilled in me by my parents that is making me feel this way. I know intellectually that he probably won’t reject me because of my tics. The fear and the emotion is so real though. I think at this point I just have to take a leap of faith and plunge off the diving board. I think the sooner I make the leap, the easier it will be to be myself around him.

I’m not sure when exactly i’m going to take that leap and tell him, but I am hoping I will have the courage to do it soon, maybe even tonight when we get ice cream together. I plan on telling him in a very casual way and not making a big deal about it. I’ll keep you guys updated on what I decide to do! Please wish me luck! :)

Tourette’s and OCD, Cousins or Siblings?

I have yet to meet another person with Tourette’s who does not also have at least one comorbid condition. For me, there has not just been one, but at least three of these ‘cousins’ as they are frequently called.

There are so many disorders and syndromes that are so closely related and occur simultaneously that I could not possibly begin to list them all. the symptoms of some disorders are so similar that it is easy to mistake one for another. There are many people who go misdiagnosed because of this. This is why comorbid conditions are often referred to as “cousins”, because they are so similar and closely related, just as members of a family might be.

I have family members who have been mistaken for each other either because they sound like the other person over the phone or because they look so much alike that someone who has not seem either one of them in a long time mistook one for the other. For example, when my sister and my cousin were younger, people mistook them for sisters rather than cousins when they were together. My sister has always looked as though she belonged to my aunt rather than my mother.

Obsessive Compulsive Disorder (OCD) is one of the conditions that can co-occur with Tourette’s. A person with OCD has obsessions and compulsions. Basically, you have an obsession, a thought that will not leave and causes you anxiety, and the only way to relieve that anxiety is to carry out a compulsion. The obsessions and compulsions can consist of a variety of things.

Everyone forgets what day of the week it is once in a while. At least, I think everyone does that once in a while. I’m really hoping it’s not just me. For me, though, it causes this anxiety and I think, “Oh my gosh, I thought today was Saturday and it’s really Friday. What if I forget what day it is tomorrow and something bad happens because I forget what day it is and forget to do something or go somewhere?”  Actually, it feels a bit more like this as it goes through my head,

“OHMYGOSHITHOUGHTTODAYWASSATURDAYANDITSREALLYFRIDAYANDWHATIFIFORGETWHATDAYITISTOMORROWANDSOMETHINGBADHAPPENSBECAUSEIFORGOTWHATDAYITISANDFORGETTODOSOMETHINGORGOSOMEWHEREORSOMETHINGLIKETHAT!?!?!?!?”

To relieve the anxiety caused and keep ‘imagined bad thing that will happen because I forgot what day it was’ from happening, I repeat this over and over in my head or even out loud if it feels necessary, “Tomorrow is Saturday, not Sunday because today is Friday, not Saturday.”

For a lot of us who have both OCD and Tourette’s, it is sometimes easy to mistake the two as siblings.

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OCD IS REAL!!!

It hurts so much to be told by the ones who you love the most that your OCD isn’t real and you should just “get over it”. It hurts so much when I try to explain that OCD is just as real as any other disorder and when my mom tells me that that’s complete BS. She screams at me that it’s my fault and makes me feel so much shame over something I wouldn’t wish on my worst enemy.

This isn’t the first time this has happened, and I’m sure it won’t be the last, but it hurts just as much every time. Mental illness is real. I live with it every day and I know all too well how real it is.