Spasmodic Torticollis. Don't know what it is? It's our latest assignment.

Recently, Blue Horse vice president of public relations, Susie Falk, gathered us together for an announcement. “Good news!” she said, “The Spasmodic Torticollis Dystonia Association would like us to conduct an awareness campaign on their behalf.” After the clapping, Susie asked the assembled Blue Horse folks if anyone actually knew what Spasmodic Torticollis or Dystonia is.

Blank stares.

And that’s the problem. Spasmodic Torticollis is actually a debilitating disease that plagues more than one million people, many of them undiagnosed. It’s characterized by involuntary movements of the head as a result of muscle spasms in the neck and shoulders. The cause or causes are not well understood but the symptoms generally progress over time and the disease is unlikely to go away on its own.

But few people are aware of this condition. That means that fewer people will know enough to ask their doctors to test for it. And that’s unfortunate, because the more people are correctly diagnosed, the fewer people will suffer needlessly. Additionally, the more people diagnosed with Dystonia, the more the drug companies fund research, which in the end will lead to an effective treatment, perhaps even a cure.

So that’s the goal for us. Currently, our public relations staff is actively seeking out stories from Dystonia sufferers to tell the world about the economic and lifestyle issues they face. If you have such a story, simply respond to this blog and we’ll be in touch.

Or write to Howard Thiel at P.O. Box 28, Mukwonago, WI 53149. Howard is the Executive Director of ST/Dystonia.

Meanwhile, as Howard is known to say, “think positive! Smile – and laugh – a lot.”

Good advice.