[Congressional Record Volume 156, Number 53 (Thursday, April 15, 2010)]
[Senate]
[Page S2371]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
TOURETTE SYNDROME
Mr. INOUYE. Mr. President, I rise today to raise awareness of a
complex neurological disorder affecting an estimated 200,000 Americans.
Tourette Syndrome, TS, emerges in children, as young as 5 years old.
Symptoms include ``tics,'' repeated involuntary noises or movement.
Some adults with TS have learned to control their tics, or redirect
them in other ways.
I have not been knowledgeable on this subject. However, I recently
had the pleasure of meeting a group of four--two mothers and two sons--
all dealing in some way with TS. Zach Pezzillo, a high school junior
from Haiku, Maui, in my State of Hawaii, was diagnosed with TS at age
7. After 2 years of misdiagnosis, Zach and his mother, Susannah
Christy, were almost relieved to learn why Zach constantly sniffed.
Zach was fortunate in that his tics were mild. He has become a well
spoken young man, a gifted photographer, and a wonderful youth
ambassador for the National Tourette Syndrome Association. I am sure
much of his success is due in large part to his mother Susannah, whose
support of her son's drive and openness with his affliction is
noteworthy.
I also had the pleasure of meeting Chris Schuette, a young man who,
in his adulthood, has learned to control his tics so well that he was
able to serve with AmeriCorps in 2007. His mother, Cynthia Schuette,
heads the Northern California and Hawaii Chapter of the National
Tourette Syndrome Association, and has been involved in educating the
public about TS since her son, now 26, was diagnosed with the disorder
nearly 20 years ago.
Not all Americans with TS are as lucky as Zach and Chris. This is a
disorder so largely misunderstood that Zach, after telling a
neurologist about his TS, was challenged by this learned professional,
who told him he must not have TS because she couldn't see any physical
manifestations of his disorder. Such misinformation leads to
misdiagnosis for children with TS. While the Centers for Disease
Control, through necessary grant programs, continues its essential
research into the causes of TS, we must do our part in educating
ourselves and others about this disorder.
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