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Why Tourette and Not Tourette’s?

You’ve probably noticed that there are almost as many names for Tourette Syndrome as there are tics (well, maybe not quite that many). These include:

  • Tourette Syndrome
  • Tourette’s Syndrome
  • Tourette’s disorder
  • Gilles de la Tourette Syndrome
  • Tourette
  • Tourette’s
  • TS
  • GTS

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If you’re grammatically inclined, you may have wondered why some use the possessive form (Tourette’s), while others do not (Tourette), and whether it matters at all.

The truth is, what really matters is that our message reaches as many Canadians as possible: what TS is and what it isn’t. So long as these conversations are happening, that’s great. It’s what’s most important.

That said, we at the Tourette Syndrome Foundation of Canada always use Tourette, never Tourette’s. It’s our policy (we also never use terms like afflicted, victim, suffering, disease or Tourette child, but those are subjects for another blog post).

Many members of the medical community want to end the use of possessive markers (the ’s in Tourette’s) for the names of disorders, diseases and conditions entirely. Their view is that it’s cumbersome and inconsistent, especially when different terms appear in medical publications, and we agree.

The main issue with using Tourette’s is that Gilles de la Tourette, after whom the disorder named, didn’t even have Tourette Syndrome (unlike, for example, in the case of Lou Gehrig’s disease). Dr. Tourette was the first physician to report it. In this way, the possessive marker is inaccurate and misleading.

So we’re left with Tourette.

We recognize that many members of our community, as well as the public, are used to saying Tourette’s and will probably go on doing so for quite awhile. Again, that’s okay. We’ll all continue to make progress no matter what we call it.

The TSFC has chosen to reflect the current medical direction in our work as we strive to educate Canada about TS to the best of our ability. We hope you’ll join us in the years to come!

Our Favourite ‘Tourettic’ TED Talks

Jessica_ThomTED is a nonprofit devoted to sharing “ideas worth spreading” on a variety of topics through short, inspiring, live talks.

The TEDx Program shares TED’s mission and format, but TEDx Talks are organized independently by local communities.

In the spirit of sharing ideas worth spreading and raising awareness about TS, here is a list of recent TEDx Talks on TS and some of the conditions that make up the “plus” in TS+.

 

  • Overcoming Tourette’s Syndrome: Marc Elliot at TEDx Nightingale Bamford School

 

 

  • Tourette Does the Talking: Thomas White at TEDxUND

 

 

  • Tourette’s syndrome—the alchemy of chaos: Jess Thom at TEDx Albertopolis

 

 

  • Living with ADHD in the Age of Information & Social Media: Theo Siggelakis at TEDx QuinnipiacU

 

 

  • Nurturing OCD: Alex Meyers at TEDxCape

 

 

  • Anxiety Disorders & Panic Attacks: Alison Sommer at TEDx Carleton College

Help Us Make Workplaces TS-Friendly

peopleMany people tell the Tourette Syndrome Foundation of Canada (TSFC) that they are concerned about workplace discrimination. We are too!

The TSFC is committed to advocating for appropriate, improved and respectful treatment of people with TS in the workplace.

The first step in improving workplace conditions and reducing workplace discrimination is gathering information. We need to learn about what is happening in workplaces right now and what has happened in workplaces in the past.

To do this, the TSFC has joined forces with York University to create an anonymous, short, easy-to-use e-survey about what is like to have TS and work. This is where you come in.

We need your help in getting this survey filled out by as many people as possible.

Every time someone fills out the online survey, the TSFC’s ability to advocate for positive change grows stronger.

Help make sure that the rights of people with TS in the workplace are protected! It only takes a few minutes of your time!

If you are 18 years or old, have TS and are either working or have worked in the past, please click here: https://www.surveymonkey.com/s/tourettesurvey

If you know someone with TS who is 18+ and has work experience, please share the link with them.

Together we can create an empowered community in an inclusive Canada.

Tourette Legacy Files, Part 1: Terry Ferguson

In this new blog series, we honour the men and women who helped the Tourette Syndrome Foundation of Canada rise from its humble roots and explore the events that shaped its history.

Terry was there from the beginning.

According to an early issue of The Green Leaflet (lovingly published in a Toronto basement using a hand roller press and carbon paper in March 1979), Terry was “one of the earliest to be diagnosed as having Tourette’s Syndrome in Canada.”

Mr. Ferguson was very open about his TS, and had up-to-date knowledge about neurological disorders other than his own. A passionate volunteer for the TS cause, Terry sat on the TSFC Board of Directors as well as “serving on the executive of the Gravenhurst Kinsmen Club,” an Ontario community in which he owned and operated The Muskokan Motel.

Terry was a very kind man, his presence being “a terrific morale booster for many of our members.” He loved photography and electronics. “An avid correspondent,” Mr. Ferguson was always “willing to exchange letters with any member.”

daddy & us

But Terry’s story and his legacy do not end there. The Green Leaflet reads: “Terry is a family man and is very proud of [his wife] Judy who stood by and dotes on his children, son Kenny and daughter, Heather, one year.” When Terry passed away, his family, including Heather and Kenny, now grown up, decided to honour his memory along with Terry’s friends by participating in the Trek for Tourette held in Bracebridge, Ontario.

Each March, this large group treks five kilometres through the crisp Muskoka air to raise funds for the TS cause that Terry so strongly believed in. Some bear the curious writing “VE3 TKF.” If you ask them, they’ll tell you it’s a reference to Terry’s call sign as a ham radio operator, his beloved pastime.

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Trek For Tourettes Mar21 2010

Says his daughter Heather, now a proud parent herself:

Growing up with a father who had TS was ‘normal’ to me. I didn’t fully understand it at young age, however growing up I became aware of his physical tics and verbal slurs. When he became excited or anxious about a social gathering or event, his tics would increase. As I matured and understood TS more, I became proud of my dad. He plunged forward in life from a difficult childhood growing up with TS to falling in love, getting married, running his own business (with my Mom for 25 years) and raising my brother Ken and I. My dad was a father in a home full of unconditional love, support, humour and happiness.

We salute Terry Ferguson for his contributions to the TS movement and for being such an incredible role model for so many. May his spirit of volunteerism be an inspiration for other volunteers, current and future.

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Guest Blogger Brittany Fichter: My Medicine of Dance

This blog post originally appeared on BrittanyFichterWrites.com.

Brittany FichterI don’t watch Dancing with the Stars often, but when I heard that tonight was Disney night, I couldn’t resist. And I was not disappointed.

I grew up dancing. It was always one of the biggest parts of my life, but I didn’t realize how much it did to improve my Tourette Syndrome, OCD tendencies and anxiety until I graduated from high school and my tics began to get worse. I’ve given it quite a lot of thought, trying to put into words what my body and soul feel when I’m dancing, attempting to make sense of why dance so helps calm my mind and loosen my tics that cling so tightly to me.

This is what I’ve come up with.

How Dancing Improves My Tourette
If you’re not familiar with Tourette, having it makes you feel like you’ve got a million little bursts of energy all over your body. These bursts of energy make you feel like you need to constantly move, your tics (involuntary vocal sounds or physical movements), itching to escape. Suppression is possible, briefly, but what you’re left with is a body with a ton of energy that has nowhere else to go.

Unless you dance.

For years, my dance studio attended competitions. Dance competitions, if you’ve never attended one, are chock full of detail. Scores are about much more than simply remembering the dance. Here are a few of the places that judges look to add or take points:

  • Strongly pointed or flexed toes
  • Good posture
  • Every part of the body full of energy
  • Smiles (throughout the entire dance)
  • Perfectly matched costumes
  • Perfectly timed leaps and steps.

I won’t go into gory detail, but in short, every look, every angle, every muscle must be in place to get full points. The dancer’s countenance must be full of energy and enjoyment, or whatever expression is appropriate for the mood of the dance.

Now, this might seem like torture for someone like me, who has obsessive-compulsive tendencies, someone whose stress shoots through the roof when I can’t hit every mark on my checklist. But in reality, it’s heaven. All those little bursts of energy that randomly pulse through my body, constantly distracting me and distracting others, suddenly have a purpose. All the energy that’s demanded for a perfect score in dance is already inside of me, only when I dance, it’s being used for good instead of evil.

Not only is my body relieved, but my mind as well. The problems that distract my mind in general can’t be attended to. The anxiety that almost constantly floats through my mind must be pushed to the side if I’m going to focus all my attention on dancing. Normally, the anxiety refuses to leave, but thanks to the perfectionism brought about by my OCD tendencies, my disorders work against each other. In order perform well, I can harness my OCD and use it for something I love.

Actually, I experienced something I’ve heard of in at least one other individual with tics, and I’m sure I’m not the only one. When I was little, dance steps became my tics. While this might sound aggravating at first, it’s really quite enjoyable. Most tics are intruders, movements that take control of your body, shaking you, making you squeak (or yell, bark, or say odd things), using you as a puppet.

But when I dance, I have control of my tics. My tics are constant, but their presence means constant practice. And practice makes perfect. A little girl dancing around a store is much more socially acceptable than a girl running around the store shrugging her shoulders and squeaking. And while I’m the last one to say tics are something to be embarassed of, dancing is a lot easier to explain than most other tics.

In a way, I can say my tics are partially responsible for making me a confident dancer. My OCD tendencies made me a student of the art. I thought about it constantly, ran the routines through my head before going to sleep, chewed over my mistakes after practices, and hyperfocused on it throughout the actual practices. Dancing helped me feel whole, complete. Instead of being split by the parts of my being trying to run in all different directions like they usually are, I could be simply in one place at one time.

Life-with-Tourettes-Dance-300x226

[Image from BrittanyFichterWrites.com]

Dance is a Fantastic Form of Exercise
I’ve previously discussed the benefits of exercise in reducing anxiety. Beyond even basic exercise, however, dance has a leg up on the competition (Pun intended. Ba-dum-paaah.) In the article, “Stress and Stress Reduction,” by Indiana University, Bloomington, it states:

A person who is completely involved in an activity, whether it be chess, rock climbing, the arts, dance, or anything else, often experiences certain subjective feelings called the “flow state.” The flow state is a feeling of unified flowing from one moment to the next in which the person is in control of his/her actions and in which there is little distinction between self and environment, past, present, and future, stimulus or response. While in the flow state, the person usually does not think of him/herself as being separate from what he/she is doing.

An article on Livestrong.com titled “Exercises for Anxiety Relief” notes that “exercises that are continuous and rhythmic tend to be especially beneficial for anxiety relief.”

Different Kinds of Dance
Fast-paced dances like clogging, tap dancing, Irish step dancing, hip hop or jazz might not be your thing, and that’s okay. There are lots of different kinds of dance that can help you focus and kick some of that anxiety to the curb.

Group classes given at gyms or community centres are often lots of fun. My mother loves a class at her gym called Barre Booty, a mix between ballet moves and other moves to strengthen and tone; I have a lot of fun, personally, with Zumba. Group classes are great because everyone’s focusing too much on her own workout to notice you. (If you still don’t feel comfortable, there are some great dance DVDs you can do at home, such as Dancing with the Stars. I have four of these DVDs, and they’re great workouts!)

There are all types of partner dances, such as in ballroom dancing (If you want more types of dance, here’s a great link to a list of ballroom dances.), which, if done with a special someone, can help lower stress even more through physical contact!

Whether you love to dance in a group or by yourself, dance can be a great way to work off anxiety, focus OCD tendencies, and give those ticcy bursts of energy somewhere to go.

Brittany Fichter is and Air Force wife, educator and writer. You can follow her on Twitter and subscribe to her blog on BrittanyFichterWrites.com. She is currently working on her memoir, “chronicling a year of life with Tourettes, OCD tendencies, anxiety, the Air Force, the grace of God, and all the shenanigans that come along the way.”

Guest Bloggers Austin and Tricia Dilworth: Science Fair Winner Covers TS

photo 3My name is Austin Dilworth and I am 9 years old. I was diagnosed with Tourette Syndrome in March 2012.

This year, I had an opportunity to participate in my school Science Fair. I chose to do my project on Tourette Syndrome. I received a gold honour at my elementary school and an invitation to attend the Divisional Science Fair on April 09, 2014. There, I received a silver honour for my study project!

I am very proud to say I have educated my friends, family, teachers and my community.

Austin and Tricia Dilworth

Says the TSFC Winnipeg Chapter: “Way to go Austin! Your table top display is so well done, I think our Chapter should borrow it for our next display opportunity.”

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Ask Dr. Ticcy: Do my tics mean that I have TS?

Ask_Dr_Ticcy_LogoDear Dr. Ticcy,

My younger brother saw a doctor about his tics because they were bothering him. He was diagnosed with TS. When I found out, I started reading about TS because I wanted to learn more about the condition. Then I started noticing that that my dad, my older brother and I all do or say things that fit the definition of a tic.

Is it possible that we (my dad, older brother, younger brother and I) all have TS? I’m wondering if everyone in my family has TS, but my brother’s tics are the worst so he is the only who saw a doctor and got diagnosed?

Thanks!

TS or Not?

Dear TS or Not,

Thank you for your great questions!

First and foremost, remember that the only way to know if you or anyone has TS is to see a clinician (that means a doctor who works in a hospital, clinic or some other healthcare setting where they provide care to patients).

Second, learning as much as you can about TS and tics, just like you are doing, is a positive step. Here is some additional information that might interest you.

According to the guide used by doctors for diagnosing conditions like TS (called the Diagnostic Statistical Manual of Mental Disorders or DSM), there is more than one kind of tic disorder. TS is the most severe type. Milder tic disorders include Persistent Motor Tic Disorder, Persistent Vocal Tic Disorder, and Provisional Tic Disorder.

The DSM-5 (the current fifth edition) states that to have Tourette Syndrome, a person must have:

  • Multiple motor and one or more vocal tics at some point (though not necessarily at the same time);
  • Tics over the course of a time period of more than one year (the tics can wax and wane during this time, the year plus time period begins after the first tic appears);
  • Tics that occur before age 18; and
  • Tics that aren’t caused by the psychological effects of a substance (e.g. Cocaine) or another medical condition (Huntington’s).

To have a different type of tic disorder, a person must meet different DSM-5 criteria.

To have Persistent Motor or Persistent Vocal Tic Disorder, you can’t meet the criteria listed above for TS. This means you can’t have TS and this condition, only one or the other. To have this particular tic disorder, you must have either single or multiple motor or vocal tics, not both types. Notice having TS means having both multiple motor and one or more vocal tics whereas having Persistent Motor or Persistent Vocal Tic Disorder means having only one type of tic. Like TS, tics may wax and wane in frequency but must persist for more than a year since the first tic appears. Additionally, and also like TS, the onset of tics must happen before age 18 and symptoms must not be caused by a substance or another medical condition.

To have this Provisional Tic Disorder, you must have tics (single or multiple motor and/or vocal) but these tics are present for less than one year after they first appear. Like TS and Persistent Motor or Vocal Tic Disorder, tic symptoms must happen before age 18 and can’t be caused by the psychological effects of a substance or by another medical condition. To be diagnosed with Provisional Tic Disorder, you can’t at any point meet the criteria for TS or Persistent Motor/Persistent Vocal Tic Disorder.

Please note that there are people with TS who do not take part in treatment (whether prescription drug or behavioural therapy, etc.). Others with TS do take medication and/or do behavioural or other types of therapy to help manage their symptoms. Many people with TS report that there associated conditions (e.g. OCD, ADHD, mood disorders) affect their daily living more than their tics. That said, tics can be disruptive to daily life for some people.

Remember that the diagnosis of a tic disorder whether it is TS or milder case, as well as treatment and symptom management, all must be done under the supervision of a professional clinician (e.g. neurologist or psychiatrist).

Don’t know where to start find the specialist near you? Ask your family doctor or primary care physician, or call the Tourette Syndrome Foundation of Canada at 1-800-361-3120.

The Story of Canada’s Only Great Dane Service Dog for Tourette

The following story comes to us from Jodi Laycock of Luseland, Saskatchewan.

Life Before Sabbath

As a child growing up in the 1970s I always had a tendency to display odd behaviours that would often get me in trouble, like pinching or poking other children and making strange sounds or wild, disruptive gestures.

“Stop that,” I was told.

“You’re causing a scene.”

“You need to learn to behave.”

“What’s wrong with you?”

I heard this day in and day out, and I would retreat deeper into myself, knowing that I had no control over my ‘traits.’

I began to avoid going out into public. Soon I got a reputation as a fun crusher, because I’d never accept invitations to go anywhere. With time, people simply stopped inviting me. So again, I spent more time alone, wondering why I couldn’t just act ‘normal.’ I was very aware of what I was doing. I knew it as my hand slammed into my nose over and over so hard it nearly broke: I simply couldn’t stop.

Growing up I was lucky enough to travel the world with my family. As a teen I lived in Switzerland, where I began to seek out medical help. Not just seek it out, but force the doctors to run tests to determine what was going on once and for all. I seriously believed that I might just be ‘crazy.’ I mean, sure I did all these odd things, but not all the time. If nothing was wrong with me medically, then I prayed that they would at least send me to a ‘shrink.’ Something. Anything.

The diagnosis of Tourette Syndrome came back. “Yeah right,” I thought. I don’t shout profanities like I see on TV. So on I went to another neurologist. And another. And another. All of them came back with the same diagnosis. They explained to me that Tourette does not always involve coprolalia. They also explained that there was no cure, and that it was something that I must learn to live with. The tics would change, coming and going, appearing and disappearing throughout my life. I would never be free of this condition that steps in and takes over my movements before I can blink or do anything to stop it. How could I live a full life? “That’s not living,” I thought.

When I was 25, I met a man who understood my condition clearly, and we got married. He helped me make light of my TS and encouraged me to recognize that everyone is different, not just me. Being imperfectly perfect is okay, too. We had a son. I tried to give my son a full life. He was active in every sport that we could involve him in. This forced me to be out in the public eye once again, still not a comfortable place for me.

The years passed and I learned how to hide or cover many of my tics. People have commented, “Oh, I never knew you had Tourette’s.” Hiding the twitches becomes an art form as one gets older. I was an artist.

The Danes

My son grew into a wonderful adult, moved out on his own, and I was left at home with a husband whose work took him away from me much of the time. I had less reason to get out and be social, so I didn’t. I have a wonderfully huge landscaped property, and I could walk my dogs—three Great Danes—in peace without any eyes on me. Our town even delivers groceries. Leaving the house became a rarity. My dogs certainly never laughed at my tics or asked me to stop doing them. They never once asked what was ‘wrong with me.’ I began to hide in this insulated world. But I knew it was wrong. No 44-year-old should spend their days avoiding other people, and depression set in.

OLYMPUS DIGITAL CAMERAMy Great Danes are very intuitive. They can read my emotions easily and react accordingly. Not only are they giants, they’re ‘leaners’ by nature. This means that they like to lean their body into and against you an awful lot.

I became very involved in the online Great Dane community. It was a way for me to be social without anyone judging me because of my disorder. I’ve made many wonderful online friends from around the world. In doing so I came upon two wonderful women who were breeding their dogs.

The Law

I’ve seen service dogs, and in the USA dogs are used for therapy and emotional support. I began looking into the laws in my area. In Canada, therapy dogs and emotional support dogs are not given public access, only service dogs, who must be Assistance Dog International (ADI) trained and certified. To be a service dog, a dog must be trained to accomplish a minimum of two service tasks. Not only must the dog be ADI certified, he or she also must come from ADI breeding facilities, and ADI breeding facilities only breed retriever/lab crosses, sadly. A lab/retriever would not be suitable for my needs, as they wouldn’t have the necessary size or weight, which I’ll explain.

Luckily, I live in Saskatchewan. It’s the last remaining province with ‘archaic’ legislation. Residents of Saskatchewan can have dogs of other breeds providing they meet training qualifications set out by ADI.

I was fortunate enough to receive the most beautiful Great Dane pup, Sabbath. He was born on Boxing Day 2013 in Ohio thanks to these two breeders who wanted me to be able to use one of their Great Danes as a service animal. They believed his size and temperament would be a perfect match for me, and trusted me with his care based on my experience with Great Danes.

I was thrilled. They sent me daily pictures, along with detailed information gathered during routine puppy vet checks. On April 1st, 2014, Sabbath flew to us from Ohio and was welcomed into our family with loving arms.

I take this responsibility with great respect and seriousness. His training will continue and he will be able to perform his two tasks as required by law. His tasks will specifically fall under the designation of a medical alert dog. He will alert me to slight physical changes in myself that I may not recognize in time to step away from a situation that would be harmful to myself or others. As his second task he will have the ability to pin me against a wall by leaning (a natural Great Dane trait), to help keep me from harm.

Life With Sabbath

Sabbath is now 5 months old and he’s amazing. He’s been by my side since he arrived, becoming used to me and familiar with my symptoms. He’s been in large stores like Costco and Wal-Mart, and accompanied me to hospital appointments and testing, all the while behaving like a perfect gentleman. He’s given me a chance to talk to people who stop us to ask what type of medical alert he’s being trained for, a great opportunity to explain to people what Tourette is and what it isn’t.

Sabbath-cardSabbath is helping me leave my house with more confidence so that I no longer feel house bound.

I am happy. Truly, deeply happy. Happy that I can see an opportunity to break free from these chains of retreat and get out. Be a part of my community. Have a life. I believe that with help from my new friend Sabbath this will be possible.

I’d like to thank my community of Luseland, Saskatchewan and everyone else for welcoming Sabbath with such love and hope, and to send a special thank you to Donna Bond, Tonya Bohannon and Pam Baxter.

Guest Blogger Ethan Macdonald: New Study Finds Parallel Between Humans and Mice

labMice_1632902cThe recent study ”Histidine Decarboxylase Deficiency Causes Tourette Syndrome: Parallel Findings in Humans and Mice” (Barlan et al., 2014) examined a rare mutation in humans with TS. So rare in fact, that it has only been identified in one gene family. This particular mutation works well for creating new animal models. Unfortunately, since the mutation is rare, the findings from this study may not apply to much of the TS population (they especially might not apply to those whose symptoms decrease with age). That said, some articles (Karagiannidis et al., 2013) suggest that other histamine-related mutations are more prevalent in the TS population. This is hopeful: perhaps there could be some therapeutic overlap.

Genome-wide association studies (studies that take a look at many common genetic variants in different individuals to see if any variant is associated with a trait) have failed to identify common mutations for TS. Perhaps this is due to small sample sizes. In this study, no causal mechanism was found between genetics and human behavior. I would consider the title of the paper to be a bit overstated given this.

The researchers hypothesized that the family with the mutation had lower histamine levels, which lead to higher dopamine levels, which lead to more tics and that this could be replicated in a mouse.

Here are some key points from the study:

  • Indeed, the researchers found that mutated mice had an underlying susceptibility for tic-like behaviors;
  • Similar to humans with the mutation, the tic-like behaviors in mice didn’t change with age;
  • By injecting Haloperidol (a “dopamine blocker”), the researchers were able to reduce or eliminate the tic-like behaviors in mice;
  • This happens in humans, too;
  • By injecting histamine, the researchers were able to eliminate tic-like behaviours;
  • Dopamine levels dropped in the striatum after the injection of HA;
  • Using neuroimaging (PET), they found some evidence in humans that there is a direct relationship between the mutation and dopaminergic regulation in the basal ganglia; and
  • This is a very interesting mechanism, and it definitely supports their hypothesis, although we still don’t know exactly how it works or what the effects are outside of the basal ganglia.

The authors of this paper suggest that the findings are broadly generalizable to the TS population (meaning that findings apply widely to other people with TS). I would caution again that this is a very specific mutation found in only one family, although perhaps the results will apply to other people with similar mutations. Further research should be done to replicate these findings and determine for whom and to what extent histamine modulation affects tics in humans.

More broadly, this constitutes a new animal model of TS with testable hypotheses. It may or may not lead to new medications or neurological interventions for people with TS. I personally believe that this vein of research probably won’t help with the social or cognitive factors involved with TS, and future findings from this stream of research could complete part of the puzzle but not all of it.

If you would like more information about this article please email tsfc@tourette.ca.

Ethan Macdonald is a researcher of Tourette Syndome and cognitive science at McGill University who had challenging TS symptoms during his adolescence.

Guest Blogger Bella Thomson: Making My Film About TS

bellaWhat Makes Us Tic is a feature-length documentary that aims to increase awareness and understanding of Tourette Syndrome. Through a variety of media including personal interviews, a short film, and an animated robot named R.T.S.T., What Makes Us Tic will illustrate what it’s like to live with Tourette Syndrome, and give audiences a good understanding of the disorder to help stamp out common stigmas and misconceptions.

The filmmaker, Bella Thomson (pictured in this screenshot from an earlier draft of the film), is a BC high-school student who has lived with Tourette Syndrome since she was nine years old. She feels very passionate about raising awareness for the disorder because she’s experienced first-hand the ignorance and lack of understanding that so many people have towards TS, so she’s combined this with her love of film to create a documentary.

…Okay, enough with the formalities. I’m sure you’re wondering why any teenager in their right mind would attempt to produce a feature-length documentary, and have it finished before they graduate. Well, my best answer to this question (other than that I am just very ambitious) is that I am very driven in my passion to raise awareness for Tourette Syndrome. To me, if society can come to understand afflictions like cancer or multiple sclerosis, then they can come to understand Tourette Syndrome, and know that it’s morally wrong to mock it, like it is for a lot of disorders or afflictions nowadays. I want people with TS to be able to feel comfortable being themselves, and not afraid of who they are. In short, I want to do my part to make a difference for TS, and I think because I’m still a student living with the disorder, that impact will be so much greater! Already, producing this documentary has been such a great experiance. It’s taught me so much. This film is actually an extension from a film I did for a school project in grade nine, which was half and hour long. The film turned out really well, but I wanted to make a big impact and there were quite a few technical issues that were inhibiting that success. So I decided in grade eleven to create an updated version of the film!

So far I’ve had a lot of success with this film. I partook in a Changemakers pitch event in November for the film, and won third place in the youth category. As well, I’ve raised a total of over seven hundred dollars on Indiegogo in fundraising for the film. There’s a lot that’s happened in regards to the film since September when I began, and there’s still lots to come!

Right now I’m organizing interviews for the film, and looking for submissions of art projects relating to TS to include in the film. My plans are to conduct interviews in Vancouver at the end of May, and in Edmonton and Calgary at the beginning of August. In regards to submissions, I’m also looking to include projects created by kids with TS about what it’s like living with the disorder. This could include artwork, poetry, music, dances, theatrical performances, vlogs—you name it! What I want to do is make this film as student-produced as possible and authentic to what real kids are going through. As well, I’m currently in production of a fictional short film and a one-act play which I’ll include in the documentary. I don’t want to let too much out of the bag at the moment, but these will give two very different perspectives on Tourette Syndrome, from two very different time periods!

So there’s a lot to be excited about, but most of all, I am very excited to have the opportunity to premiere the documentary at the National Conference on Tourette Syndrome Plus on October 23-25 in Vancouver, BC! I’m hoping to see all of you there.

If you’re interested in getting involved with my documentary, please feel free to email me at tic@bellamaria.ca.

You can also visit the film’s website.