The torture of Tourette.

• Author: Lee, Elizabeth Johnson
• Position: Medicine & Health

TOURETTE SYNDROME is a genetic neurological condition that manifests in childhood. It is caused by an imbalance in the brain of the neurotransmitters serotonin, dopamine, and norepinephrine. That imbalance causes the brain to send signals to the body--including the vocal cords--to move against the person's will. Those involuntary movements and vocalizations are called tics, which are more common than people think. An estimated 60,000,000 people in the U.S. have had tics at some time during their lives, and one out of two people knows someone who has had them.

People with Tourette syndrome have vocal and motor tics that wax, wane, and change over time. The most common are eye blinking, coughing, throat clearing, sniffing, and facial movements. Tics can be simple, single sounds or movements, or they can be complex (multiple noises, words, or movements) involving different parts of the body. There often are other symptoms as well, such as learning disabilities, obsessive compulsive disorder, attention deficit hyperactivity disorder, impaired fine motor skills, and impulsivity. There is no known cure.

My grown son and I have Tourette. My symptoms started when I was six years old as soft, high-pitched squeaky noises that I felt the urge to make until I felt 'Just fight." No one else noticed them at first, and I passed as "normal." When I was nine, I became obsessed with parallel lines. I looked for pairs of parallel lines, and whenever I found them, I had to knock the sides of my upward raised fists together twice. It was kind of like a game--except that I had to do it. When my friends and classmates noticed me doing that, they thought I was weird and made fun of me. That was when I realized that no one else but me had those "urges."

When I was 11, I had the urge to knock my knees together, which I did so often that large bruises appeared--and they hurt. It was when I rode on a bus during a class field trip that I realized the only way to stop the pain and the bruises was to stop the knee knocking. With nothing else to distract myself, I forced myself to stop; the urge to give in was overwhelming. I succeeded, but it was one of the hardest things I ever did.

It was when I was 12 that my tics really exploded, whole body jerks overcame me so that heads turned as I sat at my desk at school. Adolescence usually is the worst time for a kid with Tourette, and I had it bad. No one, including my parents, knew what I had, and so I endured years of bullying and rejection. It especially was painful when the mother of one of my best...