Recognizing National Tourette Syndrome Awareness Month

Floor Speech

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Mr. COHEN. Madam Speaker, I rise today in recognition of National Tourette Syndrome Awareness Month which runs from May 15 through June 15 each year. As a founder and Co-Chair of the Congressional Tourette Syndrome Caucus, I want to use this opportunity to address the need for additional research and, hopefully, clear up some common misconceptions about Tourette syndrome.

Tourette syndrome (TS) is a complex neurological disorder that involves tics, which are sudden movements and vocalizations or noises that people do repeatedly. It develops during childhood and changes over time. Symptoms can wax and wane across the lifespan of the individual. There is no cure for Tourette syndrome, and only three medications have been approved by the U.S. Food and Drug Administration, which each have significant side effects and contraindications. According to the Centers for Disease Control and Prevention (CDC), among children diagnosed with TS, 83 percent have at least one additional mental, behavioral, or developmental condition. These co-occurring conditions can include anxiety, Attention Deficit- Hyperactivity Disorder (ADHD), obsessive compulsive disorder (OCD), autism, Oppositional Defiance Disorder (ODD), depression, learning difficulties, and other conditions. These co-occurring conditions can significantly impact the lives of those affected by TS.

Data from the CDC suggests roughly 50 percent of children and teens with TS are not diagnosed. CDC studies including children with both diagnosed and undiagnosed TS have estimated that one out of every 162 children (0.6 percent) have TS. However, these numbers do not include children with Chronic or Provisional Tic Disorders. It is estimated that one out of 100 school-aged children have TS or another tic disorder.

Tourette Syndrome is often misconstrued by media and therefore misunderstood by the public. Many people believe TS involves obscene language. However, only 10 percent of those with TS have coprolalia, the form of TS with obscene language. Continued education and awareness can help to increase understanding and reduce stigma or bullying.

Neither the full public health impact nor the true cost of living with TS is known. Yet, individuals with TS and their families often face substantial costs due to healthcare visits, special educational services, medication, psychological and behavioral counseling, occupational therapy, missed school and work, and more.

It is for these reasons that the Tourette Syndrome Program at the National Center for Birth Defects and Developmental Disabilities remains critically important. Research from this program seeks to better understand prevalence, co-occurring conditions, impact, and costs associated with TS. The Tourette Syndrome Program also educates doctors, teachers, allied professionals, parents and the public at large so that we can increase the diagnosis rate and improve the lives of those living with TS.

I would also like to recognize the Tourette Association of America (TAA) which was founded in 1972 and is celebrating its 50th Anniversary this year. The TAA is the only national organization serving the TS community and works to raise awareness, advance research, and provide ongoing support to patients and families impacted by TS and Tic Disorders.

Madam Speaker, we must continue working to provide additional funding to increase the diagnosis rate and achieve a more inclusive and enlightened society with a better understanding of Tourette Syndrome. I urge my colleagues to join me in recognizing May 15 through June 15 as National Tourette Syndrome Awareness Month.

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