Here are some facts about Tourette's Syndrome, and a few quotations from Tourette's Syndrome Association (TSA) web sites.

"In a letter dated February 2006, TSA's Chairman, Monte Redman, and its President, Judit Ungar cited the "higher level of recognition by a national audience."
(from that letter)

"…
Realistically, we must also recognize that the growing presence of TS in the media compels us to be alert to negative and false references. We respond promptly and vigorously to every distortion. In many cases, we have elicited corrected statements, including an official memorandum to the entire staff of a major metropolitan publication.

It is essential that we continue our proactive approach toward TS awareness, while remaining responsive and reactive to any negative media brought to our attention. …

Although this letter is signed by officials of TSA, it is really a plea by the young children, the teenagers and grownups who must contend with a stubborn disorder every day of their lives.

…
Gratefully,

Monte N. Redman, Chairman

Judit Ungar, President"

"What is Tourette Syndrome?

Tourette Syndrome is a brain disorder characterized by involuntary movements and sounds called "tics." Common symptoms include excessive eye blinking, grunting, throat clearing, body twitches, and even involuntary outbursts of inappropriate language, but there are many more symptoms that can exist. Although there is no cure (yet), TS can be treated if properly diagnosed. Many individuals with TS have one or more of the following disorders: ADHD (Attention Deficit Hyperactivity Disorder), ADD (Attention Deficit Disorder), OCD (Obsessive–Compulsive Disorder), or LD (Learning Disability).

General Information:

Gender Frequency. TS is six times more common in males than in females.

Age of Onset.
The average age of onset of Tourette Syndrome is 6.5 years. The average age of onset of coprolalia (the uttering of obscene words) is 13.5 years; however, only 10 to 15 percent of individuals with TS develop coprolalia.

Symptom Control.
Tics can be suppressed or controlled for seconds to hours, depending on the severity of the case and the psychological and environmental factors. Excessive control can produce an explosive buildup which must be released. Anxiety, anger, excitement, fatigue, physical illness and stress significantly increase symptoms, thereby reducing the ability to suppress tics.

Diagnosis.
Today, the correct diagnosis of TS is often delayed for more than 5 years [1996 data]. 60 percent of the diagnoses are made by students with TS, parents, relatives, or friends who discover information about the disorder in the media.

TS is often misdiagnosed or not diagnosed by professionals because there is a lack of knowledge regarding TS. Some professionals mistakenly consider:

• TS symptoms as a psychological problem
• Eye tics as a visual problem
• Sniffing, snorting, noisy breathing, nose wiping, nose twitching, throat clearing, and coughing as symptoms of allergies and upper respiratory disorders
• Coprolalia as a necessary symptom of TS
• Suppression or control of symptoms during office visits to negate presence of TS

Prognosis.
TS is considered a chronic, lifelong disorder. The course and duration of the disorder varies in individuals as much as the symptoms.
30 to 40 percent of patients have symptoms that disappear by late adolescence
30 percent have symptoms that decrease by late adolescence
50 percent have symptoms that persist in adulthood."

The Tourette's Syndrome Association is politically active.

FOR ACTION ON TOURETTE SYNDROME

The Tourette Syndrome Association (TSA) will hold its fourth annual Congressional Briefing on Thursday, March 2, 2006 from 12:00 to 1:00 p.m. in the Senate Russell Caucus Room (Room SR 236) to educate Congressional Members and their staff about Tourette Syndrome and the crucial issues of special education, the importance of an early and accurate diagnosis, and the necessity of continued governmental support and funding for the TS education and research program at the Centers for Disease Control and Prevention. … Margaret Bush, sister–in–law to President George W. Bush, will serve as mistress of ceremonies."

And from another page,
"TSA urges friends, members, and concerned citizens to participate in the legislative process."

Contact information for the Tourette's Syndrome Association;

Maine/NH TSA
Maine Chapter (Raymond) – Serving Maine and New Hampshire 877–368–9800
e–mail
tourette@thezac.com
website: http://www.thezac.com/tourette