State Rep. Tom Murt writes about the Pennsylvania Tourette Syndrome Alliance, which advocates for individuals with Tourette syndrome.
By State Rep. Tom Murt
Tourette syndrome is a neurological disorder characterized by tics, which are involuntary, rapid, sudden movements or vocalizations that occur repeatedly. It is critical to promote knowledge of Tourette syndrome, and the effect this syndrome has on those diagnosed, as well as their families and caregivers. With the appropriate investment, knowledge and supports, children with Tourette syndrome can be afforded the tools and skills needed to accommodate to their condition and go on to live successful and fulfilling lives.
The mission of the Pennsylvania Tourette Syndrome Alliance is to promote awareness and acceptance, provide education and assist families, schools and communities while advocating for individuals with Tourette syndrome. Tourette Syndrome Awareness Month spans from the month of May to June, and with awareness month now in the rearview mirror, it is time to recognize this disorder and to be aware of challenges those with TS face in the upcoming year.
The symptoms of Tourette syndrome include both multiple motor and/or one or more vocal tics present at some time during the illness. The occurrence of tics can be many times a day. With Tourette syndrome, there can be periodic changes in the number, frequency and type of tics. In certain cases, symptoms can disappear for weeks or months at a time. Most children are diagnosed between the ages of 7 and 10, but the onset of symptoms occurs before the age of 18.
The effect of symptoms on the child’s or adolescent’s self-concept, family and peer relationships and classroom participation determines which needs are to be addressed in treatment. Tourette syndrome can affect the most crucial years of development for adolescents, and the services provided by the Pennsylvania Tourette Syndrome Alliance are focused on increasing understanding of the disorder and providing proven accommodations and strategies so the individual with Tourette syndrome can succeed.
In many instances, there are several conditions that accompany Tourette syndrome. These conditions include Obsessive-Compulsive Disorder, ADD/ADHD, Sensory Processing Disorder, learning disabilities and handwriting difficulties. These added diagnoses can make functioning in school, the workplace and society even more difficult.
Marc Elliot, a man who was diagnosed with Tourette syndrome in his adolescence, now travels the country speaking to students and educating them about Tourette syndrome. In an article by Karen Barrows from the New York Times, Elliot claims, “One of the worst parts of having Tourette’s is that a lot of people think that we’re joking.” He believes that this is part of the reason that most people have very little understanding of the condition, and why he works to educate others on the topic.
There are many misconceptions of Tourette syndrome, such as all those who suffer from Tourette syndrome use profanity, or voluntarily act. Another widely spread misconception is that Tourette syndrome is disabling. Development may proceed normally, and there is no need for treatment. However, when tics interfere with functioning or school performance, and/or if there are other disorders also present (such as OCD, or attention deficit/hyperactivity disorder), some effective medications are available.
Children with Tourette syndrome can generally function well at home and in a regular classroom. If they have accompanying emotional or learning problems, they may require special classes, psychotherapy and/or medication. Former Phillies outfielder Jim Eisenreich has Tourette syndrome and overcame his condition to have a very successful career in Major League Baseball. It was my honor to meet him recently and discuss what we are doing in Pennsylvania for Tourette syndrome. He was both grateful and laudatory.
In society, it is crucial to be aware of the signs of Tourette syndrome and the effects it has on those diagnosed and their caregivers. There is no cure for Tourette syndrome, however, recognizing the toll the symptoms take on those afflicted is helpful in understanding this syndrome. Although Tourette Syndrome Awareness Month is over, it is important to continue learning about this syndrome, and to understand its effects in the projected years to come.
Any family dealing with Tourette syndrome and in need of help is encouraged to contact the PA Tourette Syndrome Alliance here.••
Rep. Thomas P. Murt represents the 152nd Legislative District. He is chairman of the Disability Caucus and the Human Services Subcommittee on Mental Health. Catherine Peterman contributed to this article.