Gardnerville man offers hope for Tourette Syndrome patients
Warren Lenhart is on a mission to create awareness about a disorder that is often misdiagnosed and misunderstood.
Lenhart is launching a support group for sufferers of Tourette Syndrome, a neurological disorder characterized by tics – involuntary, rapid, sudden movements or vocalizations repeated.
The support group, a local chapter of the Tourette Syndrome Association Inc., will help people identify whether they have the disorder, provide resources for help and refer them to doctors that can prescribe medications to control its symptoms.
“This will help reassure (sufferers) that there are others with similar problems so they don’t feel alone,” Lenhart said.
“There’s a lot of ignorance. People don’t know about it and they are afraid.”
Lenhart’s son, now 25, was diagnosed with Tourette Syndrome when he was 11.
“We saw symptoms after reading an article in The Washington Post,” he said.
“He has made great progress in dealing with and compensating for the disorder,” Lenhart said. He’s very courageous about it.”
Lenhart said the group will have neurologists and pediatricians on a medical advisory board available to refer potential patients.
Having medical staff available is crucial, he said, because medication prescribed to treat Attention Deficit Disorder, which often accompanies Tourette Syndrome, can make tics worse.
The group’s first meeting will be February 23, 2003, at Washoe Medical Center in Reno.
Lenhart hopes to hold regular weekly meetings.
“The potential exists to make this an active chapter,” he said. “We will provide support, mentoring and counseling services.”
Lenhart, of Gardnerville, emphasized that the disorder, which is often accompanied by other ailments such as Obsessive Compulsive Disorder or learning disabilities, does not have to dominate a person’s life.
“These kids are still bright. They can be doctors and lawyers. They just need accommodations to allow them to do it.”
Part of Lenhart’s motivation for starting the support group is being able to educate parents about the disorder’s symptoms by working with area schools.
“A lot of people have kids that have it and they don’t know it,” he said.
The typical age of onset for the disorder is before the age of 18. It affects more males than females.
The National Institutes of Health estimates that 100,000 Americans have full-blown Tourette Syndrome.
By educating children as young as the fifth or sixth grade, Lenhart said he can help reduce social stigma associated with the disorder.
“I want to show them that (a Tourette Syndrome) sufferer is no different than anybody else,” he said.
Lenhart said teaching children about the condition will help those who may have it feel good about themselves.
“It’s about the positive things they can do,” he said.
He also wants to be sure schools are accommodating the special needs of Tourette Syndrome sufferers.
“I plan to work with area schools to be sure they have untimed tests and an allowance for them to go outside (when they are having) tics,” Lenhart said.
Tourette Syndrome sufferers often have difficulty keeping a job and avoid social situations.
While popular culture such as movies and comedians focus on the symptom of uttering obscenities, fewer than 15 percent of people with Tourette Syndrome manifest this behavior.
More commonly, those with the disorder have tics, which include eye blinking, head jerking, tongue clicking or twirling about.
Those with Tourette Syndrome often try to mask their tics in public.
Lenhart said his son used to “hold in” his tics while in school.
“He didn’t learn very much because he was so focused on being sure nobody was looking at him.”
Lenhart moved to Gardnerville in November 2001 from Rockville, Md., a suburb of Washington, D.C.
He was a member of the Board of Directors for the Washington, D.C., chapter of Tourette Syndrome Association Inc.
The national, non-profit group is dedicated to finding the cause of and cure for the disorder and finding ways to control its effects.
Lenhart said he is enthusiastic that the support group, the first one of its kind in Nevada, will be a success.
“It is going to be interesting and exciting,” he said.
Although the disorder is debilitating, Lenhart said it can be dealt with.
“There are new medications and there is hope,” he said.
n Laura Brunzlick can be e-mailed at email@example.com