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June 08, 2023

Tourette syndrome, a condition that causes uncontrollable 'tics,' often begins in childhood; here are the signs

Philly skyscrapers will light up teal next week to raise awareness of the disorder, which affects 1.4 million Americans, including singer Billie Eilish and former Phillie Jim Eisenreich

Illness Tourette Syndrome
Tourette syndrome Pavel Danilyuk/Pexels

Tourette syndrome causes motor or vocal tics that usually first appear when a child is ages 5 to 10. In many cases, they do not disrupt daily life, but medication and behavioral treatments may be prescribed in more serious cases.

Two of the tallest buildings in Philadelphia, One Liberty Place and Two Liberty Place, will turn their lights teal on Tuesday night to mark Tourette Syndrome Awareness Month.

Tourette syndrome, a nervous system condition that typically appears during childhood, is characterized by uncontrollable movements or sounds, known as tics. It is part of a spectrum of conditions known as tic disorders.

Tourette syndrome, also known as TS, and other persistent tic disorders affect about 1.4 million people in the U.S., including about 1 in 50 children ages 5 to 14, according to data from the Centers for Disease Control and Prevention. 

Many people with TS are not properly diagnosed, so it is difficult for researchers to estimate exactly how common the condition is. A CDC study that relied on parent-reported data found that 1 in 333 children ages 3 to 17 has been diagnosed with TS. But studies that have included children with diagnosed and undiagnosed TS estimate that 1 in 162 children have the condition, suggesting many cases go undiagnosed. 

About 5 in 6 children with Tourette syndrome also have a mental, behavioral or developmental. More than one-third of children with TS also have obsessive compulsive disorder, and more than half have attention-deficit/hyperactivity disorder.

Celebrities like Lewis Capaldi, Billie Eilish and Seth Rogen have spoken out about their own experiences with TS. So has former Phillies player Jim Eisenreich.

"This twitch became out of control. I didn't know what it was at the time. I've since learned that I have Tourette's," Capaldi said in his Netflix documentary, "How I'm Feeling Now," which premiered in March.

Here is what to know about TS, including its causes, symptoms and possible treatments:

What causes Tourette syndrome?

The exact cause of TS is unknown, but the disorder likely is caused by a combination of genetic and environmental factors, according to the Mayo Clinic. Neurotransmitters like dopamine and serotonin, chemicals in the brain that transmit nerve impulses, also may play a role.

Along with family history, sex also could be a factor. Among diagnosed children, boys are three times more likely than girls to have TS, a CDC study found. 

What are the symptoms?

The main sign of TS is the presence of tics, which can appear as sudden, brief, intermittent twitches, movements or sounds that people do repeatedly. The symptoms usually begin when a child is 5 to 10; the first symptoms are often motor tics in the head and neck region.

There are two types of tics: motor and vocal. Motor tics are movements of the body, like blinking or shrugging the shoulders. Vocal tics are sounds made with the voice, which can include humming or yelling out a word. 

A person's tics can range from a simple tic that is temporary to many tics that are complex and long-lasting. Before the tic, a person with TS may experience uncomfortable bodily sensation, like an itch or tingle. The tic then brings relief.

People with TS cannot stop their bodies from engaging in the tics. In some cases, people may be able to stop themselves from doing a certain tic for a period of time. This is difficult, though, and eventually the person will have to do the tic, according to the CDC.

In severe cases, tics can debilitate people emotionally, physically and socially. 

What are the treatments?

Health professionals may diagnose a person with TS if the person has both motor and vocal tics, and the symptoms have lasted at least a year.

There is no cure for TS. Many people with the condition do not have tics that interfere with their daily lives, and thus do not need treatment. But, in more serious cases, medication and behavioral treatments may be prescribed.

Pennsylvania and New Jersey each have organizations that serve to promote awareness of the condition and advocate for people with TS. Tourette Syndrome Awareness Month runs from May 15 through June 15 each year.

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