B'ville: Raising TS awareness

Hailey Harding and Ethan Lunkenheimer are two teens living with Tourette syndrome.

Harding is an eighth grader attending Durgee Junior High School and Lunkenheimer is a senior at Cato-Meridian High School. Both teens have been affected by Tourette and continue to further awareness of the disease.

When people think of this disease they think of it as the swearing disease, Harding said. That's not what it's all about.

In fact, only about 15 percent of people with TS experience symptoms of cursing. Affecting more than 200,000 Americans, Tourette syndrome is a neurobiological disorder characterized by tics, or involuntary rapid movements or vocal outbursts. The symptoms usually emerge between the ages of 5 and 18. This inherited disease does not yet have a cure, but medications help control the symptoms.

As active members of the Tourette Syndrome Association, both Harding and Lunkenheimer participated in a workshop held at the Baldwinsville Public Library this past Saturday. The workshop, Tourette Syndrome 101, was presented by the CNY Tourette Syndrome Support Group.

The six-hour program discussed the criteria for diagnosis of Tourette syndrome and the most common neurological disorders associated with the syndrome. Four speakers came to the event, including Susan Conners, an education specialist for National Tourette Syndrome Association, Kathy Giordano, an advocacy specialist for National Tourtette Syndrome Association, Margie Henning, an occupational therapist and presenter at the National Tourette Syndrome Conference, and Dr. Paul M. Cohen, a practicing psychologist specializing in treating children, adolescents and adults with TS.

Individual efforts

Recently Lunkenheimer attended the National Tourette Syndrome Association Leadership conference in Washington D.C. While there, he spent a day on Capital Hill discussing Tourette syndrome and informing senators and representatives about how the disease has affected him.

Living with this disease has been a learning experience, Lunkenheimer said. I didn't care what people thought. I got involved with this support group and met other kids who are dealing with the same thing I am going through.

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