An Educated Guess on the Number of ST’rs

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Several years ago, doctors around the world decided to set up a new organization that would meet every other year in different parts of the world to discuss research going on in the field of movement disorders.  Anyone that had any kind of interest in this field were invited to attend and contribute their knowledge.  The most recent one was held in Spain just this year and it was very well represented by people from all over the world.  It’s getting to be like a steam roller – it just keeps going and going and picking up more and more interest.

That’s the best thing that can happen for all of us and that’s why a real concerted effort is needed by all of us to band together to make it known that we need help.  It doesn’t pay for us to go our individual ways and FORGET.  Yes, we need your continued help and membership is the best way to do that.

For instance, in 2005, the International Movement Disorder Congress met in New Orleans to discuss various aspects of movement disorders.  That’s what Spasmodic Torticollis/ Cervical Dystonia is.  At this 2005 Congress a paper was posted.  It was written by 2 of the leading neurologists in the world – Doctor’s Joe Jankovic of Baylor University in Texas and Joe Tsui (Pronounced Choy) of the Parkinson’s Research Center of Vancouver, Canada in collusion with C Bergeron, Allergan, Inc.

The gist of the paper was “Prevalence of Cervical Dystonia and Spasmodic Torticollis in the U.S.”  For years it has been said that there were 3 people with ST out of every 10,000.  That study was done in Rochester, Mn where the Mayo Clinic is.  The study was done “off of of Medical records”.  In other words they concentrated only on the medical records as acquired from patients visiting at the Mayo Clinic. (It is a very limited study.) That meant that approximately 83,00 total people had ST.  Another study done in the United Kingdom indicated that a nine year prevalence study estimated that there were 18 out of 100,000 – somewhat less than the Rochester study.

How many ST’rs are there?  The paper posted by Jankovic/Tsui estimates that there could be upwards of anywhere from 1,000,000 to 4,000,000 people.  That’s a huge discrepancy.  How did they arrive at these figures?

In an on-line survey that was sent by e mail to 2,000,000 people in 2004 questions were asked that were derived from a Beth Israel Dystonia Survey study that were from a study of various movement disorders that accessed neck and/or head tilting and head shakiness.

The results were concluded from 60,062 responders – 79% female of which 92% were Caucasian. Awareness of ST was about 5.4% overall/0.39% reported a diagnosis of ST.  Of especial interest was that moderate to severe neck pain/head tilting and/or shakes was reported in at least one person.

The conclusions suggest from these preliminary findings that ST MAY BE SUBSTANTIALLY MORE PREVALENT IN THE US POPULATION THAN HAS BEEN PREVIOUSLY REPORTED.  (Now these basic figures were excerpted from the original paper that was posted and do not get into the actual figures which would, for these purposes, become burdensome).

The relatively high estimated prevalence of 0.39%, 22 times higher than published prevalence figures, suggests that ST is more common than previously thought, and that this disorder has a considerable impact on the health and quality of life of many individuals.

Why nothing more has been done on this study no one has been able to give us an answer.  But, Now You Know.

I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand