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Teens: What do you think about the mystery NY Tourette Syndrome cases?

By now, many of you likely have heard about the case of the now more than two dozen LeRoy, N.Y., students who developed Tourette Syndrome-like symptoms and tics in December. Various news reports, medical claims and reports by experts since have been all over the Internet.

There are many different theories out there about what exactly contributed to the onset of these TS-like symptoms, but according to Wikipedia, the school was tested for toxins and all other factors for their symptoms were ruled out, the students were diagnosed with a “mass psychogenic illness” resulting from stress.

What we at Teens4TS want to know is this: What do you think of this entire case? Does it help or hurt Tourette Syndrome advocacy? If you or someone you know has TS, how does this entire case make you feel? Do you agree with the ultimate diagnosis of these students? Do you think they are faking? What is your opinion about some of the things said by the doctors and experts in this case?

Several parents from all over the country already have weighed in with their thoughts, which you can check out on the TSParentsOnline blog. We would love to hear your opinion, too, and you can let your voice be known about this very important, trending topic in one or more of several ways:

  • By leaving a comment in this blog entry’s comments section
  • By logging on to our Facebook page and leaving a comment on our wall or under the status update about this topic
  • By logging on to our Twitter page and sending us a tweet
  • By sending an e-mail to teens@njcts.org.

It’s that simple. Each time we get a response by e-mail, Facebook or Twitter, we’ll post it below. Comments submitted on the blog itself will stay in the comments section. We encourage the entire TS community to respond and put forth an opinion.

Who knows, the right people just might notice and some of the confusion surrounding this case could be cleared up! In the meantime, check out these links posts from Jan. 24Jan. 27 and Jan. 31 for more about what is going on in LeRoy, N.Y.

Kayley T. says … “The Leroy girls seem to be faking, right?  None of them have a biological illness, as indicated by dozens of diagnostic tests by specialists. The story from Leroy, N.Y., seems fantastical, but in fact, it’s completely plausible. And I don’t think they’re faking. I don’t think it was environmental, nor do I think they’re infected with some strange disease. There are records of outbreaks of mass psychogenic illness throughout history; dancing mobs in the middle ages, tales of women from a convent who all mewed like kittens, the Salem Witch Trials and many more.

“I understand why people think they’re faking; they don’t understand Conversion Disorder (psychogenic seemingly neurological symptoms), but I do. In addition to often disabling tics from TS I’ve had since I was 5 or 6, I have Conversion Disorder. Like the girls in N.Y., there was no catastrophic stressor to trigger my symptoms, they simply appeared from thin air. This happens. More than 20 percent of women at some point in their lives have psychogenic symptoms.

“Women with Conversion Disorder outnumber men with it 3 to 1, and some studies cite an even greater discrepancy. So it’s no wonder why the original cases were all girls, and also gives insight to why they may be prone to it.  I just wish people would stop accusing the girls of faking. Who would fake this? Converison first left me paralyzed, then caused terrible spasms that lasted for hours. My conversion symptoms induced immobility of my body, which seemed to protect me from my painful self-injurious motor tics, which were constant at the time. 

“The girls who are dealing with recent onset tics aren’t alone. I just wish they knew it!  The best news for them is that Conversion Disorder is rarely permanent.”

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9 Comments

  1. I am really suprised that none of you have heard of PANS or Syndenhams Chorea. These are diseases that cause tourettes like symptoms in people and are associated with contagious diseases especially Strep. It is far more likely to affect girls than boys. It is a real physical illness that many people have caught and been affected with. Although it would be very unusual for so many people to have caught it at one school, they may have been exposed to a new strain of a common bacteria that is more likely to lead to this illness. It has also been linked to drug exposure. Hopefully, the parents won’t stop looking for answers to their childrens medical conditions. Just because they don’t fit typical Tourettes Syndrome criteria doesn’t mean this isn’t a real illness. I would expect people with Tourettes to have more sympathy for the way these kids lives will change if they can’t find treatment. Incidentally, while people are born genetically predisposed to Tourettes, there is currently a lot of research into how the gene is turned on triggering symptoms. Many doctors have been looking at common illnesses like Strep as a possible trigger.

  2. Hi,

    This is all pretty sketchy to me. First of all… mostly girls? Only one in four people who have Tourettes are girls, and they are claiming that this tic outbreak came from some random chemical thing? No… you’re born with this kind of stuff! I don’t know if this “mass mystery illness” is true, because tic disorders are neurological and cannot be “caught”. But still, we also have to think about it this way… Some people don’t believe that Tourettes is even real! Some people think it’s fake. Even with this in mind, I am still skeptical about this illness, even though they seem pretty serious about it. We have to also remember that they aren’t exactly calling it Tourettes. They are just saying that the virus has “Tourettes-like symptoms”. Taking all of this into consideration, I’m still not sure if I’m buying it. It seems so unreal; catching a tic illness from an infected agent or chemical toxin… but, Tourettes could seem pretty unreal to outsiders too. Still, Tourettes is in your brain and it is a neurological disorder- not a mass illness, and there is actual evidence that Tourettes is real. I don’t know about this illness… I think there is a high possibility it’s fake.

    I don’t think this is helping the Tourettes advocacy at all. It may bring a bit more attention to Tourettes, but it also makes us sound crazy since they are labeling this Tourettes-like condition as hysteria!

    This case makes me a bit irked, especially since TIME Magazine is relating it to people in the past that danced themselves to death, nuns who were held in convents because of meowing and shouting obscenities, and witch hunts from the Middle Ages and early Renaissance. It feels a bit degrading towards people with Tourettes. One father had said “Obviously we are all not just accepting that this is a stress thing … It’s heart wrenching. You fear your daughter’s not going to have a normal life.” He’s basically stating that people with a condition like this mass illness and Tourettes cannot lead a normal life. Maybe he is stressed over his daughter having a new condition, but maybe this is all made up! I don’t know!

    I do not agree with the ultimate diagnosis. Like I said, tic disorders cannot be contracted from a chemical in water. It’s not as simple as that. You cannot “catch” a tic disorder. It’s in your brain, not your water!

    I think they may be faking.

    These experts are saying that teenage girls are susceptible to high stress at their age, but boys are also. Why aren’t they catching the disease? It makes no sense.

    Emma<3

  3. I am gonna say BS. I think it’s an elaborite scam for money or even just attention. I’m sorry. Why after thousands of years of existance we have some unknown disease that makes you twitch. I really hope that I am wrong, but it’s sure fishy. Why only girls, too?

  4. I am honestly not sure if these students have TS. As Harry K said, TS symptoms usually begin at a much earlier age. These students are in high school.

    However, if these students really do have TS- it must be hard.

    Most of us were diagnosed at young ages and have learned to deal with our Tourettes.

    I was diagnosed at age 6, and I am now 16 and have control over my tics. It did interfere with school work and friendships at the time that I was overwhelmed with my tics- so I feel badly for these students that their grades may suffer and they are just now having to learn to deal with their tics.

  5. I am actually not sure about all this. A chemical reaction causing Tourette’s? It sounds unlikely to happen. But, I truthfully don’t know. If it is real, then I hope they find realistic and helpful answers. If it is fake, then I assume that they are just making fun of it all. This seems more fake than real. It will probably hurt TS advocacy more than help it. I just don’t understand how people can be so cruel.

  6. Looks fake…even the movements they are making look like they are working at it. I call B.S. Probably some big lawsuit scam that the parents cooked up.

  7. I’m not smart enough to pretend I know what is causing the “outbreak”. Whether environmental, psychological, or otherwise it seems real to those showing symptoms. My hope is that this brings more attention to Tourettes and the end result is a better understanding of the disease in the media and in the medical community.

    Jason

  8. Hey Guys,

    This whole case of the girls (and now actually one boy) from Le Roy HS in NY is making me just a little skeptical… The fact that they all developed it overnight is baffling, and I’m sure is confusing most of you guys too.

    It’s important to realize that this cannot be Tourette syndrome, when considering the facts of the girls’ cases. They are all older than 17, and as we all know, Tourette’s normally becomes first apparent in children ages 7-10. The fact that nearly all of the students with the symptoms are girls also helps to refute the possibility that this is TS. Boys are 3X more likely to develop TS symptoms than girls, and since all but one of these students is a girl, I find in highly unlikely that this is TS. Again, their ages and gender certainly do not rule them out from the possibility of having TS, but it does make it less likely, especially when considering the fact that they all developed it at the same time.

    However, a few symptoms may point to a few things that I’m actually learning in school right now. Because the change seemingly occurred overnight, there clearly was something that entered their body, or something that became different in their system suddenly that brought on the tics. As I’m currently learning in in my AP Environmental Science class, they may have ingested something that was a chemical/biological hazard, perhaps with somewhat of a level of toxicity.

    In my AP Psychology class we’re currently learning about how mental disorders can actually be brought on voluntarily. The fact that all these students at the same school suddenly have the disorder makes me wonder if this is what happened here… Now how this happened in this case we won’t exactly know, but it is certainly something to consider.

    After watching various YouTube videos of the broadcasts by several news-stations about this story, I couldn’t help but notice how much attention this was getting, and how great it is that TS is being so widely talked about on the news just because of this situation in NY. Tourette’s awareness is certainly increasing as a direct result of this, however there is a downside. Unfortunately since most of the viewers of television are not the educated people we’d like them to be, some may come to the conclusion that TS is contagious and that is why 12 girls got it suddenly overnight. It would be nice if the media would do more work to clear this up so that any speculation of this would be removed, but hey, what can we do? We will just have to see how it pans out…

    The bottom line is, there’s something weird going on , and there’s going to be tons of theories/speculation until it’s finally solved. If this is real and the students are not faking the symptoms, I still doubt that it is TS because of all the factors that go into a diagnosis of TS compared with what they have displayed thus far. However if it is, it would pretty much shatter almost everything researched/learned about TS to this day. What do you guys think?

    -HarryK

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