ST'r News Media Kit
News Room
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Contacts:
Tom Andrews
Andrews Media Ventures
(262) 673-6263
andrewst@charter.net
Howard Thiel
Executive Director
ST/Dystonia, Inc.
(262) 560-9534
howardthiel@sbcglobal.net
BAFFLING NEUROLOGICAL DISORDER NOW TREATABLE
More Education Urged on Spasmodic Torticollis (ST)
Summer, 2003 - As many as 125,000 Americans who now suffer from Spasmodic Torticollis (ST) need to understand that much progress has been made in recent years to treat this often misdiagnosed neurological disorder. "This is a treatable condition," said Dr. James Auberle, a movement disorder neurologist and medical director of ST/Dystonia, Inc., Toledo, Ohio. "If someone is suffering, they don't necessarily have to suffer as much as they probably are at this point in time. People need to understand that this is not a psychiatric condition. Our suspicion is that there are quite a few more people out there suffering from this disorder that do not know that treatment exists and that it is very effective."
Spasmodic Torticollis (ST) is a neurological disorder with abnormal movements of muscles that can be very forceful, extremely painful and can literally change a person's life. Part of a larger family of neurological disorders called dystonias, ST usually starts slowly with a small pain at the base of the neck. The situation gets worse week by week and is then followed by rotating or pulling sensations and severe pain. The pain gets so bad that normal, everyday activities like sitting, standing, walking, standing, eating or brushing teeth can become extremely difficult to nearly impossible. Further complicating the entire situation is the fact that most ST victims end up losing their jobs or have extreme difficulty getting their health insurance plans to pay for treatment. Insurance problems can occur even if the patient keeps his or her job because the in-house insurance company and its staff are totally unfamiliar with this condition.
For many years, physicians thought of ST as being a psychiatric condition. Indeed, some patients have suffered for many years, going from one doctor to another who told them that the problem is "in your head" and that they "should go to see a psychiatrist." Believing they have a psychiatric problem, many ST victims simply lock themselves away, leading a depressing, reclusive lifestyle. ST has also been confused with Wry Neck, Cerebral Palsy and Muscular Dystrophy. Unfortunately, this confusion has caused many physicians to misdiagnose and thus ineffective treatments for the problem.
"I went eight and a half years without any diagnosis other than being told it was all psychological and (I should) go see a psychiatrist," said Howard Thiel, an ST victim and the executive director of ST/Dystonia, Inc. "The pain, the pressure, the pulling and the burning sensations were so severe. The thing that was the strangest was the pulling sensation where I'd be driving in my car and all of a sudden my head would be turned to the left. The only way that I could get it back straight was by pushing it back with my left hand. I went to 41 medical specialists of all types – chiropractors, regular doctors, specialty doctors before I was finally referred to a movement disorder neurologist who made the proper diagnosis."
Truly, misdiagnosis of ST is often not the physician's fault. There simply is very little knowledge about this disorder and there is a pronounced lack of research and teaching about it in medical schools. Although nobody knows exactly what causes ST, genetic studies have shown that it occurs in no more than 5-10 percent of those surveyed. An accident or a trauma of some kind can trigger its onset. In approximately 50 percent of the ST population, there is a family history of head or hand tremors (familial or essential tremors). ST affects movement only and it is not life threatening. Current treatments include various oral medications, injections of botulinum toxin, either Botox (type A) or Myobloc (type B), or surgery.
About ST/Dystonia, Inc.
ST/Dystonia, Inc. was founded in 1989 by Howard Thiel and Harry Chobanian to help people who suffer from ST and other forms of dystonia to become improved human beings, provide them with hope for the future and to help them readapt into society. It is dedicated to informing people that there is no need for despair because there is much hope and help for ST patients and their loved ones. Currently, the organization has about 2,100 members worldwide and offers a number of benefits and services including a quarterly newsmagazine, a 30-page Oral Medication Booklet, annual symposiums around the United States and Canada, private for-members-only archives/library containing all of our magazines going back to January 1999, a kit which enables people to obtain disability, and much more.
Editor's Note: Dr. James Auberle and Howard Thiel are both available for interviews. Additional information about spasmodic torticollis (ST) is available at www.spasmodictorticollis.org or by calling 1-888-445-4588.