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America’s Spectrum of Support for Patients

Americans “Go Red” in February for heart disease awareness and paint the town pink every October in honor of breast cancer patients. These celebrations are a stark contrast, however, to the public’s response to some health conditions.

People living with Tourette Syndrome, for example, can tell you that they are prone to stares and jokes. The neurological condition is characterized by sudden, involuntary movements or outbursts. The vocalizations, in particular, are often referenced when stereotyping the condition. 

Tourette Syndrome and tic disorders affect approximately one of every 100 children in the U.S. And, while most people are aware of its signs, public acceptance for the condition is low.

Living with Tourette Syndrome and its associated stigma have been documented to cause feelings of isolation and loneliness. The syndrome is associated with reduced social acceptance and affects quality of life, even for people who have mild tics.

Those living with Tourette Syndrome face not only the burden of their syndrome, but most must learn to manage a co-occurring condition as well. Roughly 86% of children with Tourette Syndrome have at least one mental, behavioral or developmental diagnosis. Obsessive compulsive disorder, attention-deficit/hyperactivity disorder, anxiety and learning difficulties are among the most common. These challenges are often compounded by hurtful comments or puns that further stigmatize people with Tourette Syndrome and other tic disorders. 

“Tourette Syndrome is a very complex, layered condition that remains vastly misunderstood. Using it as a punchline or an insult serves to subjugate individuals dealing with this chronic, painful and lifelong condition to hyperbole,” said Amanda Talty, President and CEO of Tourette Association of America. “Negative remarks propagate bullying, mistreatment and other issues right from the beginning.” 

The Tourette Syndrome community looks forward to donning teal during Tourette Awareness Month, May 15-June 15, but working toward increased education and showing respect for people who live with the condition are appropriate ways to offer support every day.