[Congressional Record Volume 168, Number 93 (Friday, May 27, 2022)]
[Extensions of Remarks]
[Pages E563-E564]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




         RECOGNIZING NATIONAL TOURETTE SYNDROME AWARENESS MONTH

                                 ______
                                 

                            HON. STEVE COHEN

                              of tennessee

                    in the house of representatives

                          Friday, May 27, 2022

  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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