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The first ever World Congress on Tourette’s Syndrome has been announced! Taking place in London from June 24th-26th, this congress is intended for health professionals to explore diagnosis, treatment, and research about all that comes with Tourette’s. Unfortunately this isn’t open to the general public, but if you know of any medical professionals in London, let them know! Even though we can’t be there, it’s pretty awesome that some higher-ups are getting the ball rolling on creating an international alliance on treating our disorder.

The first ever World Congress on Tourette’s Syndrome has been announced! Taking place in London from June 24th-26th, this congress is intended for health professionals to explore diagnosis, treatment, and research about all that comes with Tourette’s. Unfortunately this isn’t open to the general public, but if you know of any medical professionals in London, let them know! Even though we can’t be there, it’s pretty awesome that some higher-ups are getting the ball rolling on creating an international alliance on treating our disorder.

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Tourette's Toucan!

Anonymous said: Why do tics wax and wane? Like, I'll have a really great tic free week and I'll think that everything is going good, when suddenly I'll have a horrible tic day out of nowhere. Why does this happen?

Tics are caused by an imbalance of two neurotransmitters (dopamine and serotonin). These chemicals naturally change their levels to flow with daily life, so sometimes there’s a sudden change in this balance for no apparent reason. Also, stress/anxiety/sadness/any other feelings can cause tics to get worse.

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Tourette's Toucan!

Anonymous said: Hey, I know that you're a tourette's blog, but I was curious if you knew anything about trichotillomania. I haven't found any active blogs on tumblr. Thanks, and even though I don't have tourettes (I just have motor tics), your blog really helps :)

I know what it is and that it’s pretty common in people with TS, but I’m not sure how much I can help you outside of that. I can always research some resources for you and I know this blog exists, although apparently it hasn’t been active since March. :/

EDIT: Also found this blog, seems more active.

Does anyone know of any trichotillomania resources?

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Tourette's Toucan!

ticcing-clock said: So I know that Tourette's is genetic, but no one else in my close family (first cousins and great grandparents included) but I think I get in from my dads side if it is genetic because now that I think about it my second cousin twitches a lot and stutters but in a way that relates to me, so my question is how common is it to be the only family member with TS?

Geneticism doesn’t mean a disorder is rampant in a family, it just means it increases the predisposition to it. Of course there will be people who are seemingly the first, because otherwise there would have to have been families notorious for it throughout history, and that seems a bit silly. I’m sure tons of followers are the only person they’ve ever met with TS. It’s entirely possible that your cousin has a tic disorder, and very possible that much older family members had it, but doctors of the time didn’t have a word for it. My advice is to stop worrying about how genetic it is and start focusing on how to improve it. :]

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Tourette's Toucan!

veryhotbuns said: Person with Tourette's here!! When you say that everyone with TS has some level of OCD what do you mean? I immeadiately thought of the way that both sides of my body have to be even e.g if one of my eyes is wetter than the other I'll be super uncomfortable until they're even, or even if one of my ears is more warm than the other etc... Is that what you mean by 'levels of OCD'?

Tourette’s has a component called “tics of the mind” which is almost identical to OCD. The main driving force behind OCD is “If I don’t do this, something bad will happen,” but with tics the idea is just “I have to do this.” I made a video about this a while back. You can find it here.

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Tourette's Toucan!

ashtonsbutterfly said: Hi Cassandra! I love your blog so so much! It helps me so much on a daily basis and the memes are hilarious and relatable. I also love hearing your story and watching your vlogs; they're very informative and inspiring. Today I was diagnosed with Tourette's Syndrome. It was scary, but sort of expected since I've been experiencing tics for over a year now. My tics have gotten so bad to the point where I have to wear a neck brace during school. (continued in second ask!)

My main tics include head jerks to the left (which is why I have to wear the neck brace because it becomes very painful after a while) shoulder/back tics (idk they’re weird?) blinking, stuttering, and sniffling. I’m not sure if you relate with any of these tics, but I was wondering, how do you personally deal with motor and vocal tics? Sorry this ask is so long! -Skye <3

Thank you so much! :D I’m so glad you’ve gotten a diagnosis. It makes taking the steps to treatment a million times easier. I’ve had a head/neck/shoulder jerk for about 15 years and my neck and back are in constant pain. Thankfully I’ve never had to wear a neck brace, but I do completely understand what that feels like. I guess the only way I can say I deal with them is by just living my life despite them. There’s not much you can do to stop them (each specific tic can have some coping mechanisms, but that doesn’t really do much), so you just have to accept it as a part of who you are and keep going.

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Tourette's Toucan!

Anonymous said: A little tid-bit of positivity: My little brother is 8 years old. He is very much aware of my tics and knows that screeching sounds are a HUGE trigger. Before his birthday party earlier this year, he told me he would tell his friends not to make any screeching sounds so as not to trigger me. It was the sweetest thing

Aww that’s really sweet! It’s always awesome having supportive family members. :]

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Tourette's Toucan!

Anonymous said: i haven't been diagnosed with tourettes but my mother has really bad ocd and has said i most likely do too. when im really focused on something (like when i play my instrument) nothing ever happens but i start to feel the urge to do whatever the movement or whatever is. i sometimes get vocal sort of tics too, where i make a small sound or breathe out any air in my mouth. it's all really confusing. should i talk to my therapist?

A therapist can’t really diagnose you with Tourette’s (it’s a neurological condition, rather than a psychiatric one). OCD is extremely common in people with TS (like essentially everyone has some level of it). It’s also pretty common to say your symptoms almost completely disappear when focused on something you enjoy. But I would absolutely speak to your therapist about the prospect of finding a doctor who can diagnose you properly. It’s never a bad thing to have a second opinion from a professional.

Tourette's Toucan!

runn1n9-away said: Hey ur blogs really nice cause I dont feel like a freak. Cause I yell things alot and it started out as hiccups but now I scream wherever I go and I get really sensitive about it cause everyone makes comments about it and I feel like I cant be normal

Thank you! I think you can absolutely be normal, if that’s what you’re looking for. There are plenty of people with TS who walk around every day without feeling bad for themselves, and you can without a doubt be one of them if you work at it.

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Why TS jokes are harmful:

It’s not just hurt feelings, it’s perpetuating myths.

People who make jokes at the expense of vocal tics perpetuate the myth that TS is simply shouting out things, which are often “funny.” This myth is not only harmful because it makes light of a serious disorder, but it forces people to be exposed to the idea that TS is only vocal tics. This means for those people (such as myself) who have mainly motor tics, even the most intelligent doctors will not be able to diagnose them properly, because they simply don’t know what the disorder truly is.

Then, of course, there is the problem of being insensitive. You wouldn’t make fun of someone for having asthma or diabetes, right? So why would you make fun of an equally biologically based disorder? Tourette’s causes serious injuries, hospitalizations, and sometimes permanent damage. People have been made wheelchair-bound, dislocated joints, torn ligaments and tendons, and had endless other injuries inflicted due to our bodies working against us. I myself have a knee that dislocates itself periodically due to an old tic I haven’t even had for over 10 years. Tourette’s is not a funny disorder full of jokes and laughter, it is a serious medical condition.

Lastly, why is making a joke at someone else’s expense ever okay? Even if you’re just calling someone else’s hair ugly, you never know what’s going on in his/her life to cause it. How about we just stop being nasty for the sake of being nasty and start being respectful? Is that such an insane proposition?

What do you guys think about Tourette’s jokes?

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mentalhealthkitten:

everyone with tourette’s is adorable and perfect, no exceptions

(via strawberriespanic)

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The Importance of Diagnostic Labels

So I’m taking a class called Behavior Deviation in Children and something we went over today seems pretty relevant to questions I get here often: What are the pros and cons of getting a formal diagnosis?
I think everyone who has been following the blog for a while knows I’m 100% pro-diagnosis and professional treatment, but I’m always looking to show every angle of each issue, rather than just spewing my opinions at you guys. So here’s the list we were given:

Pros to diagnostic labels:

  • Helps clinicians summarize and order observations
  • Facilitates communication amongst professionals
  • Aids parents by providing recognition and understanding of the child’s problem
  • Facilitates research on causes, epidemiology, and treatments of specific disorders

Cons to diagnostic labels:

  • Disagreement about effectiveness of labels to achieve their purpose
  • Negative effects and stigmatization
  • Can influence children’s views of themselves

I think the list of pros definitely outweighs the cons, not just in numbers, but in the importance of the subject matter. This is a pretty great way to summarize my thoughts in a scientific and concise manner. What do you guys think?

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Tourette's Toucan!

circularthoughts said: Ive been diagnosed with a pretty rare thing according to my doctors, after about 7 years of trying to diagnose me, a study has been finally done and they came up with a name to this disorder that I and very few other people have. It is called complex motor stereotypies. To make it short, it is bilateral tic disorders that I am unable to suppress and have been increasing over time. I am starting to become defeated. Crying daily. Lost the ability to write and there is more to come.

I’m sorry to hear that. :/ I’m not sure what you were looking for me to say, but I really am sympathetic towards you during this rough time in your life.