Ben CardinU.S. Senator Class 1
[D] Maryland, United States

Length: 7 minutes, 8 seconds

« Previous Clip Next Clip »

View Congressional Record
Watch Full Session

Loading text...

Mr. CARDIN. I rise to bring attention to Tourette syndrome, a neurological disorder that affects more than 200,000 Americans in the most severe form and as many as 3 million more who exhibit milder symptoms. Tourette syndrome or TS is characterized by repetitive involuntary movements and vocalizations called tics.

The disorder is named for a French neurologist who in 1885 first described the condition in an 86-year-old woman. TS occurs in people from all ethnic groups and is present in males three to four times more often than in females.

The early symptoms are typically noticed first in childhood, usually when a child is between the age of 3 and 9 years of age. Although TS can be a chronic condition with symptoms lasting a lifetime, most patients experience the most severe symptoms in their early teens, with some improvements occurring in the late teens and continuing into adulthood.

In May, a 13-year-old boy named Jackson Guyton from Parkton, MD, visited my office to tell me about his experiences with Tourette. Jackson first noticed symptoms 5 years ago during the summer of 2007. While on vacation with his family at the beach, his body started making strange movements he could not control. First, came a head jerk, then eye-squinting and rolling; later, he started emitting high-pitched squeaking sounds. As Jackson put it: ``I was a regular kid one moment, with good grades and very few problems, then in the next I was rolling my eyes and making sounds. ..... like a fire alarm going off.'' In school, the sound was so loud his friends would cover their ears and avoid sitting near him in class, and parents of other children began complaining about his being in their children's class. With teachers who were uneducated on TS, the symptoms continued throughout the school year.

So as to avoid ridicule, Jackson began skipping school or spending more time in the nurse's office than in class. Fortunately, Jackson's parents found a physician who was able to quickly diagnose the condition as Tourette Syndrome. Jackson changed schools and spent the next few years in treatment, trying various medications prescribed by his doctors.

Those medicines were somewhat helpful. Jackson tried other treatments and clinical trials at Johns Hopkins University, where he met Dr. Matthew Specht, a professor of child and adolescent psychiatry who teaches children exercises to help control the tics.

That technique, cognitive behavioral intervention therapy or CBIT requires patients to use a great amount of focus and it does not work for everyone. But it did help Jackson control his squeaks. In the middle school, he encountered a guidance counselor named Mrs. Oates who helped change his life. In Jackson's words: She learned as much as she could about TS and helped me learn how to deal with the kids better and talk to teachers about what was happening. She also gave me a safe place to hang out when things were bad. Through her and a group that my mom started to help other families with TS in our area, I made a few friends who understood me better.

She also helped Jackson develop a presentation for the 6th grade class in his school. Jackson is now 13 years of age, and in September he will enter the 9th grade at Hereford High School. He is no longer feeling depressed, and he no longer retreats from others because of his condition. Rather, he welcomes the opportunity to use his experiences to educate teachers and other students as a Youth Ambassador, a position for which he was trained at the National TSA Conference with about 40 other young people.

Recently, he presented information about TS to more than 400 elementary school students. He says he truly enjoys answering their questions. He believes, as I do, it is important for people to understand that children with TS are not doing strange or disruptive things on purpose, and he just wants to be treated like everyone else.

Jackson still has unpredictable and sometimes painful tics, but he knows now that TS will not stop him from accomplishing everything he wants to do in life. Last year, Jackson's little brother Davis was also diagnosed with TS. Jackson says that having a teacher who understands the problem and knows how to help is one of the most important things in the life of a child with TS.

He is preparing a special presentation for Davis's class that he will deliver when the 2012-2013 school year starts. I am very proud of this young man. I am hopeful the examples set by him, his [Page: S4868] guidance counselor Mrs. Oates, and other TSA Youth Ambassadors are blazing a trial for those who are newly diagnosed.

I am also pleased Congress understands how important public awareness of Tourette is. In 2000, Congress created the Tourette Syndrome Public Health Education Research Outreach Program at the Centers for Disease Control and Prevention. The purpose of this program is to increase recognition and diagnosis of TS, reduce the stigma attached to the disorder, and increase the availability of effective treatment.

The program also includes a public-private partnership between the CDC and the Tourette Syndrome Association, or TSA, that provides educational programs for physicians, allied health professionals and school personnel as well as those who have TS, their families, and the general public. To date, the CDC-TSA outreach program has conducted more than 520 educational programs for 32,000 professionals and community members nationwide.

This program is working well. In addition, CDC has entered into a cooperative agreement with the University of Rochester and the University of South Florida to better understand the public health impact of tic disorders, including TS, for individuals and their families and the community.

One of the areas being assessed is education, as they are looking at the effect of TS on standardized test scores, grade retention, and the presence of an individualized education program. Significantly, they are also measuring teachers' understanding of TS, and this information will be used to inform and improve outreach programs.

I urge my colleagues to support full funding of this program again this year so we might expand awareness of TS and lead to a better quality of life for people such as Jackson and families across the Nation who are affected by this disorder.

I yield the floor.