BY MARY KAY SWEIKAR
DANVILLE — People who have Tourette Syndrome experience a lot of social isolation because the general public doesn’t understand their problem, according to three experts who work with TS patients.
“The public needs to realize that people with TS cannot control their facial tics and verbal outbursts,” said Sande Shamash, executive director of the Tourette Syndrome Association of Illinois.
“If you associate with a person who has TS, it’s best to try and ignore their unusual facial movements and sometimes obscene language,” Shamash said. “If you confront them, you are increasing their stress level, which can make their symptoms worse.
“People with TS have a right to be out in public just like anyone else. However, for their own good, they should avoid situations that they already know will be stressful for them.”
Shamash said the kinds of TS symptoms manifested vary from person to person, and fewer than 10 percent exhibit vocal obscenities along with facial tics.
“Unfortunately, there’s not one specific medicine for treating Tourette Syndrome,” Shamash said. “And many of the medicines that treat conditions that accompany TS, such as depression, often make the TS symptoms — like tics — even worse.”
Shamash said research is being conducted primarily on children with TS.
“There’s probably fewer than 200,000 people in the United States who have TS,” he said, “so, unfortunately there aren’t as many resources allocated to studying this disease as to diseases that affect more of the population.”
Milia Bergkoetter, a local psychotherapist, said when a family member has TS, it becomes a problem for the entire family.
“People who have TS usually have a fear of interactions with other people, and it’s difficult for them to maintain relationships,” she said. “The other members of their family need to be very understanding and supportive of this person.”
Bergkoetter said it’s important for parents of a child with TS to try to ignore the tics and inappropriate facial movements. “Pointing out these abnormal behaviors will add stress and probably make the symptoms worse,” she said.
People with TS should get help through a self-help group or individual counseling, according to Bergkoetter.
“They also need to get good, restful sleep and avoid stressful situations and conflicts whenever possible,” she added. “Since there’s no cure for TS, people with this condition need to develop mechanisms to help them cope with their disorder.”
Kirk Melton, a physician assistant with Dr. Naveed Sadiq, has been treating Jeromy Taylor of Cat-lin for his TS for about 18 months.
“I find it challenging and rewarding to work with Mr. Taylor and his rare disorder,” Melton said. “He’s a very cooperative patient and seems to appreciate that I’m willing to listen and work with him.
“A combination of medicines is needed to treat his condition, since he has other medical problems besides Tourette Syndrome,” Melton said. “Unfortunately, there’s no cutting-edge medical treatment available for TS at this time.
“People need to realize that TS is a neurological condition that causes behaviors that the individual can’t control, just like the urge to sneeze,” Melton added, “and they need to be understanding and compassionate toward people like Mr. Taylor.”
FYI
For further information on Tourette Syndrome, consult the We site http://www.TSA-Illinois.org or call (877) TSA-1655.
