Monday, February 6, 2012


I feel like I would be remiss, writing a blog about living with Tourette Syndrome, if I didn't address the going-ons in LeRoy and my feelings towards it.  For those of you living outside of the US (or under a rock in the US), there has been an outbreak of what is being referred to as "Tourette's-like" symptoms in LeRoy, NY.  There have been 16 documented cases since August 2011.

Before I go any further, because I have a feeling that some of what I am going to say might touch a nerve, let me say that I have the utmost sympathy for the people of LeRoy, especially the 16 suffering from tics.  This isn't something I would wish upon anybody and because I became symptomatic relatively late in life, I can clearly remember dealing with the diagnosis and having to acclimate to school and my environment.  I went to a psychiatrist within the first 6 months of my diagnosis who determined my tics were stress related and who proceeded to increase my anti-anxiety medication to the point where I had no real emotions or feelings on the medication.  I didn't go to my prom; looking back now it's very easy to say I wouldn't have gone anyway, but truthfully, I could have become a very different person were it not for the Tourette's.  I transferred to an independent study school a semester after being diagnosed because sitting for 6+ hours in classes wasn't conducive to me learning.  I was terrified to get back up on a horse after being diagnosed, and to this day I still refuse to ride with a crop or whip of any kind because I am still scared of the repercussions of ticcing on a horse with an aid in my hands.

What I'm trying to say is I get it.  I get not being able to be in school and I get going to psychiatrists and having them tell you that what you are living with is "stress-related".  Hearing that illegitimizes what you are going through.  I know what it feels like to not be able to do your "favorite" things.  I can empathize with what these teens are going through, and everything I have to say about LeRoy has nothing to do with the teens and everything to do with the media.

The bottom line is that these teens (and one adult) don't have Tourette Syndrome.  To even carry that diagnosis, they would have to tic for approximately 6 more months.  In addition to that, Tourette's isn't contagious.  Tourette Syndrome isn't something you can catch by being around me (though I have heard of Touretters telling stragers they have a terrible communicable disease and to stay away.  We all cope with being in public different ways...)  It is something that the majority of the time affects prepubescent children; typical age of onset is around 6-8 years old.  Furthermore, Tourette's - like many other neurological disorders - affects males 4 times more frequently than it does females.  There is no conceivable way that 16 people that don't fit the typical "criteria" for being a Touretter suddenly, and within a couple months of each other, developed true Tourette's.

There are approximately 16 cases of this mystery ailment in LeRoy; 14 adolescent females, one adolescent male, and one adult female.  This doesn't correlate with Tourette's.

I may not mind that so much, if phrases like mass hysteria, psychiatric treatment, and conversion disorder weren't being thrown around with Tourette's.  What I have isn't treatable with therapy or psychiatric medications.  What they are hypothesizing the 16 people in LeRoy have, is treatable by these means.  I know that nobody in the media has come out and said that the 16 people in LeRoy have Tourette's; but let's be real here.  Tourette's is so heavily stereotyped against that in my opinion comparing it to what is happening in LeRoy will ultimately do more harm than good.  I already get told by people that they know somebody who "grew out of Tourette's" and I get asked why I don't take medication and other similar questions a lot.  People who hear me tell them there is no known cause or cure typically don't believe me, and I have had people come up to me at later dates and (always in tones of surprise) verify what little there is to know about Tourette's.

When I first heard about this story, my first thought was at least now somebody will pay attention.  Now maybe something will be done about looking for a cure or about acceptance.  I hoped that the media could use this opportunity to talk about what Tourette's is and what it is like to live with Tourette's and draw parallels to what is happening in LeRoy (and I emailed the Today Show suggesting something along these lines.  I am still waiting for a response 2 weeks later.).

No such luck.

Instead they are showing these girls talking about how their lives are ruined, they are showing psychiatrists talking about how it is a psychological disorder, they have Erin Brockovich leading a crusade to find an environmental toxin, and there are articles on the internet blaming Facebook and YouTube for the spread of symptoms.

I'm not an expert in neurological disorders; I wouldn't even call myself an expert in Tourette's, but I do stay up to date with current clinical trials and research, though any new advances are few and far between.  What I do know though is that if this is an environmental toxin, why all these cases in such a short time span affecting a very specific group of individuals?  The school district has come out saying that there are no toxins in the school that the 15 teens attend.  I do know that this isn't Tourette Syndrome; though that doesn't lessen or change what they are going through.

What I also know, is that while it is tough to pin down how many people have full-blown Tourette's like I do (Tourette's with complex verbal and complex motor tics), approximately 1 in 1,000 people in the United States are diagnosed with some degree of Tourette Syndrome.  That's just talking about Tourette's, that isn't including Transient Tic Disorder, Chronic Tic Disorder, or Tic Disorder Not Otherwise Specified.  If you extrapolate to include those diagnoses, around 1 in 150 people have a tic disorder in the United States.  That's a lot of people.  I am still waiting for a "cause".  I woke up one day just like those in LeRoy and I couldn't control my right hand.  About a week later I started head-banging and leg tremoring.  There was no catalyst for me, nobody in my family - immediate or extended - has a tic disorder.  There was no warning.  Nobody has ever offered me an explanation.

I am still waiting for a "cure".  There is very little research money going into Tourette's (compared to other disabilities) and all I have been given are recommendations on what to try, medications that are being experimented with in the field of tic disorders, and homeopathic treatment ideas.  I have given up hoping for a cure; I will still try medications and I will keep up to date with any breakthroughs, but I am done living with the hope that one day somebody will cure Tourette Syndrome.  At least not in my lifetime.

And every other one of those 1 in 1,000 people with Tourette Syndrome are still waiting and hoping for the same things.

I'll openly and plainly admit, I am frustrated with the outpouring of research and support into these 16 cases.  I hope and pray that they can find a way to treat or cure those 16 people in LeRoy because I know what a life with severe tics is like.  But that doesn't mean that I can't be frustrated at the same time because this opportunity to demystify Tourette's and remove stereotypes isn't being taken.  Life with Tourette's is excruciatingly frustrating at times, and this is one of them.

"The death of one man is a tragedy.  The death of a million is a statistic."

~ ~ ~ ~ ~

Update: Somebody with some actual sense debunks the myths that these tics were caused by something other than conversion disorder here.

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