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Understanding Tourette Syndrome

Once you’ve seen someone with Tourette syndrome, you’re likely to remember it. Commonly known as Tourette’s or TS, this neurological disorder usually begins in childhood and is characterized by repeated and involuntary movements or vocalizations, known as tics, that occur repeatedly in the same way.

Muscle tics associated with TS include eye blinking, facial grimacing and head or shoulder jerking. Common vocalizations may include repetitive throat clearing, sniffing or grunting sounds. It begins by definition before adulthood, most commonly in kids age 7-10.

It’s Tough on Kids

Teasing and name-calling from peers is unfortunately common for children with Tourette syndrome, especially during the elementary school years.

The Discoverer

The French neurologist Dr. Georges Gilles de la Tourette first described this condition in 1885. However, only recently have the symptoms been recognized by most doctors as Tourette Syndrome. According to Sherrie Sponseller, administrator/advocate for the Pennsylvania Tourette Association, “between 1885 and 1965, only 50 cases of Tourette’s were described in medical literature.”

Jay Geyer, 18, from Collegeville, PA, learned in 4th grade to cope with his condition by talking to his classmates. Jay’s mom, Lesley Geyer, says that Jay “quickly developed a phenomenal comfort level in speaking to others about TS.” Jay has spoken to book clubs and community groups and participated in conferences. He has also helped run a family support group and has won awards for his efforts.

Lesley Geyer offers this advice to kids with TS: “Try not to let it get you down. Take the lemons and make lemonade. Keep in mind that the tics often get better as you get older, and that is a very good thing. Don’t be afraid to let others know you have TS, and seek out opportunities to meet other people with TS, adults and kids alike. Know that you are not alone with this sometimes-difficult-to-tolerate condition.”

How Many Have It?

According to the Tourette Syndrome Association, (TSA) The actual number of people with Tourette’s is unknown due to the lack of funding available for research. It is estimated that 200,000 people (both children and adults) in the U.S. have the condition.

Diagnostic Difficulty

Because common tics can be misdiagnosed, doctors do not make a TS diagnosis until symptoms are observed for at least a year and the conditon’s onset has been reviewed. Although there are no blood or laboratory tests available for diagnosis, neuro-imaging studies and blood tests can rule out other conditions that might be confused with Tourette. People with TS are at higher risk of also having attention deficit disorder (ADD) or obsessive-compuslive disorder (OCD).

A Tourette Myth

Among those who have heard of Tourette syndrome, a common myth is that all of those affected involuntarily and unexpectedly utter obscenities or insults, a condition known as coprolalia. According to the editors of www.tourettes-disorder.com, some 5-15 percent of those with Tourette syndrome exhibit coprolalia. Most just have involuntary muscular or vocal tics.

What Causes It?

Genetic and environmental factors each play a role in causing Tourette syndrome, but the causes are still unknown. Current research shows that “the disorder stems from the abnormal activity of at least one brain chemical (neurotransmitter) called dopamine,” according to the TSA. Gender plays an important factor in Tourette expression. Boys are three to four times more likely to have it than girls. Boys with TS are more likely to have tics; girls are more likely to have obsessive-compulsive symptoms.

How Is It Treated?

Unfortunately, no cure has been found for Tourette syndrome. Most of those affected require no medication for tic suppression. For the others, prescribed medications can lessen the severity of tics, though there are often side effects. Many people with Tourette syndrome experience an astounding improvement by their early twenties, then further reduction of tics as they grow older, sometimes with complete remission.

Marichelle Rocha is a local freelance writer.

They Overcame Tourette Syndrome

Several well-known people have learned to cope with Tourette syndrome. Jim Eisenreich, who played with the 1993 National League pennant-winning Phillies, has had the condition since childhood, but wasn’t diagnosed until he was a baseball player. Eisen-reich still donates much of his time to educating the public about Tourette and serves as a role model.

Other famous people with Tourette syndrome include Dan Ackroyd, soccer star David Beckham, the late Howard Hughes and Howie Mandel. There is speculation that the composer Wolfgang Amadeus Mozart and the renowned poet and lexicographer Samuel Johnson had Tourette syndrome.

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