This month’s selected charity, the National Tourettes Syndrome Association  is in honor of my son who will be celebrating his 20th birthday this month.        He was diagnosed with Tourettes Syndrome when he was about 5 years old and I still remember feeling like I just had the wind knocked out of me when the doctor  told us the news.     Little was known about the disorder, and we were told that sometimes children outgrew it and in severe cases medication may be required but that it could also alter their mood.

Most people don’t know about or understand the disorder, we only know from own personal experience that the “tics” have changed over the years and tend to come out more when he is over tired and stressed.   When he was younger, my son actually was made to run laps at soccer practice because he kept making noises and the coach thought that he was mocking him.      Later our son told us about the extra laps at practice so we told the coach the noises were not something that he could help and told him about the disorder.     The coach apologized profusely and really felt bad because he actually knew someone that had Tourettes in a severe form and didn’t recognize the milder symptoms in my son.    Recently my daughter noticed a student in one of her classes that displayed some symptoms so rather than punish him, she started researching more about the symptoms so she would understand and could help.

We always wanted our son to live a normal life and didn’t want any special treatment so we never told anyone until after the incident at soccer practice.     My son’s symptoms peaked when he was about 10 years old when he would open his mouth and bite very hard, to the point he could have bitten his tongue off.  It was both scary and frustrating because you just have this overwhelming helpless feeling, and it was the first time that he actually asked about the medication.  Fortunately the symptoms subsided and although he still has a mild form of the disorder, it has never stopped him from leading a normal life and I couldn’t be more proud of the young man he has become.   He is one of the lucky ones, there are some people that have very severe cases and it is only by continued research that they will be helped.

What is Tourettes?

Gilles de la Tourette syndrome (Tourette Syndrome or TS) is a neurological disorder which becomes evident in early childhood or adolescence before the age of 18 years.  Tourette syndrome is defined by multiple motor and vocal tics lasting for more than one year.  The first symptoms usually are involuntary movements (tics) of the face, arms, limbs or trunk.  These tics are frequent, repetitive and rapid.  The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck, trunk, and limbs.

These involuntary (outside the patient’s control) tics may also be complicated, involving the entire body, such as kicking and stamping. Many persons report what are described as premonitory urges — the urge to perform a motor activity. Other symptoms such as touching, repetitive thoughts and movements and compulsions can occur.

There are also verbal tics.  These verbal tics (vocalizations) usually occur with the movements.  These vocalizations include grunting, throat clearing, shouting and barking.  The verbal tics may also be expressed as coprolalia (the involuntary use of obscene words or socially inappropriate words and phrases) or copropraxia (obscene gestures). Despite widespread publicity, coprolalia/copropraxia is uncommon with tic disorders.

Neither echolalia (echo speech) or coprolalia/copropraxia is necessary for the diagnosis of Tourette syndrome.  However, for a confirmed diagnosis of TS both involuntary movements and vocalizations must be present.  Echo phenomena are also reported, although less frequently.  These may include repeating word of others (echolalia), repeating ones own words (palilalia), and repeating movements of others.

Although the symptoms of TS vary from person to person and range from very mild to severe, the majority of cases fall into the mild category. Associated conditions can include attentional problems (ADHD/ADD, impulsiveness (and oppositional defiant disorder), obsessional compulsive behavior, and learning disabilities.  There is usually a family history of tics, Tourette Syndrome, ADHD, OCD.  Tourette Syndrome and other tic disorders occur in all ethnic groups.  Males are affected 3 to 4 times more often than females.

Most people with TS and other tic disorders will lead productive lives.  There are no barriers to achievement in their personal and professional lives.  Persons with TS can be found in all professions. A goal of TSA is to educate both patients and the public of the many facets of tic disorders.  Increased public understanding and tolerance of TS symptoms are of paramount importance to people with Tourette Syndrome.

The disorder was named for a French neuropsychiatrist who successfully assessed the disorder in the late 1800’s:

For more information, see http://www.tsa-usa.org/index.html

The Tourette Syndrome Association, Inc.(TSA®) is a 501(c)(3) organization, qualified to receive charitable contributions in accordance with IRS regulations

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