I am sure many of you have noticed the story about the 12 teenage girls in Leroy, New York who all have been having tic-like symptoms.  According to the news, this started out of the blue with all of the 12 girls.  This news story has been going on for over two months and  most recently hit the national news.

I will be honest with you that there needs to be more discussion about Tourette Syndrome (TS), but I am not sure if this news item is really doing those who struggle with Tourette Syndrome any justice.  The news sensationalism is starting to sound like the Salem witchcraft hunt.

I have seen videos of some of the girls and it does appear that they are having both movement and vocal tics.  According to the news there has been intensive investigations into this situation and it has been determined that they have not identified any specific environmental factors that may have triggered the phenomenon.  I think the CDC is also involved in the investigations.

Over the last two months the diagnosis has been referred to as being Tourette Syndrome.  Unfortunately that does not explain 12 different individuals experiencing TS at the same time.  Most recently, I see the diagnosis is changing from Tourette Syndrome to a diagnosis of conversion disorder. Conversion disorder, formerly known as hysteria,  is a neurosis marked by the appearance of physical symptoms such as partial loss of muscle function without physical cause but in the presence of psychological conflict. Symptoms include numbness, blindness, paralysis, or fits without a neurological cause. It is thought that these problems arise in response to difficulties in the patient’s life, and conversion is considered a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders 4th edition (DSM-IV). 

Conversion disorder can present with any motor or sensory symptom including any of the following:

  • Weakness/paralysis of a limb or the entire body (hysterical paralysis or motor conversion disorders)
  • Impaired vision (hysterical blindness) or impaired hearing
  • Loss/disturbance of sensation
  • Impairment or loss of speech (hysterical aphonia)
  • Psychogenic non-epileptic seizures
  • Fixed dystonia unlike normal dystonia[clarification needed]
  • Tremor, myoclonus or other movement disorders
  • Gait problems (Astasia-abasia)
  • Syncope (fainting)
  • Hallucinations of a childish or fantastical nature  [1]

I don’t think this flip-flopping of the diagnosis is doing any benefit for those who have Tourette Syndrome.  To some extent, it is implying that Tourette Syndrome is psychological.  This misnomer has been a battle that every individual with Tourette Syndrome has faced. The big question: Is it real or is the individual purposely doing the tics?  If you have had any experience with TS, it is obvious that physiological that may be affected by psychological factors, such as anxiety.

This morning I saw two of the girls on a morning television show and they appeared to be frustrated because they knew no more today about what is wrong with the them than what they knew two months ago.  It almost sounded like if they had a specific diagnosis, it would imply that it could be treated and they would be cured.   When I heard this, I thought to myself, stand in line.

There are thousands of people in the United States, and all over the world, who would love to have some answers for Tourette Syndrome and have a cure for it.  From a research standpoint, it is my understanding that we are not even close to understanding Tourette Syndrome, let alone having a cure.

I am very glad there is discussion about Tourette Syndrome, but I wish it was more factual rather than being referenced with hysteria, or as a plague, or with conversion disorder.  I hope this does not negatively affect the funding for research for Tourette Syndrome.  We need research to continue and we need funding to do the research.  I am concerned that this flip-flopping of diagnosis is muddying the waters which could potentially affect people’s reaction to Tourette Syndrome.  To prevent this from happening, I think people need to talk about it more.  Get the facts out.  More importantly I expect a statement to be made by the Tourette Syndrome Foundation. I think it is best that we try to control the discussion, or at least add some credence to it. Instead, I hope this news story can turn into a positive. These 12 girls may provide a unique research study for evaluating Tourette Syndrome. Hopefully research teams can get involved and turn this news story into a benefit for Tourette Syndrome research.

You may ask why does this concern me so much.  My son has Tourette Syndrome, and at one time in his diagnosis stages conversion disorder was brought up. That was four years ago. Since then the doctors refer to his condition as Tourette Syndrome or non epileptic seizures (my son also has epilepsy). It depends on the type of tic being discussed.

Regardless of the label, Tourette Syndrome has put a heavy weight on my son’s life, and I don’t want some negative publicity making things worse than they already are.  Over the years the media has sensationalized Tourette Syndrome.  Tourette Syndrome patients were commonly seen as oddities on talk show stages.  I thought we had got beyond this.  Unfortunately the media loves sensationalism, and they are back at it.  See the following sensational headline, which references the plague.

For more information about the LeRoy incident see:  The ‘mysterious’ Tourette-like syndrome plaguing a N.Y. town

[1] Conversion Disorder, Wikipedia,  http://en.wikipedia.org/wiki/Conversion_disorder

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