Amanda, Jasper, Colin and Oprah

Imagine knowing that at any moment, you could lose control of your body, twitch uncontrollably, shriek out strange words or begin blinking repeatedly. For those living with Tourette's syndrome, this nightmare is their reality.

Tourette's is a mysterious neurological disorder that is more common than one might think. According to the Tourette's Syndrome Association, one out of every 1,000 people is affected and there is no known cure.

Based on the statistics, there is at least one student who suffers from this hereditary disorder in almost every school in America.
Amanda discusses Tourette's

Tourette's syndrome often causes a person to have "tics" or uncontrollable urges. Tics can be anything from the incessant need to flap your arms and shake your head to the repetition of random words like "coffee" and "metal."

Amanda, a 14-year-old who suffers from Tourette's, struggles to hold in her tics every day at school. Fear of teasing and taunting overpowers her innate need to let the tics out.

"I can't really explain how I feel, but it just hurts inside," Amanda says tearfully. "I am afraid that people will actually make fun of me."

Once Amanda gets home from school, she says all the urges she suppressed come out in a steady stream, making childhood activities like homework nearly impossible.
Jasper discusses Tourette's

Boys are three to four times more likely to suffer from Tourette's syndrome than girls, and Jasper has been struggling with the disease since he was 6 or 7 years old.

Jasper, whose tics are mostly verbal, says he can feel every tic coming—almost like a cough or a sneeze. The urges can also be compared to a "hiccup in your mind." When the tic overtakes Jasper, he says the words "coffee," "metal" and "die" repeatedly.
Colin discusses Tourette's

Colin, another child who suffers from Tourette's, isn't shy about his disease. His mother Dorene even says he's an advocate of sorts for other children with the neurological disorder.

When Colin feels a tic coming on—like the need to shake his head—he says he can't help but give in to his urges.

"It's kind of like a little man in your head, and he's just saying, 'You've got to tic,'" Colin says. "[The tic] keeps nagging and nagging and nagging at you until finally you just say, 'Okay.' And then you shake your head or you cough or you do whatever."
Amanda, Jasper and Colin

Along with physical symptoms, people with Tourette's syndrome often struggle with Obsessive-Compulsive Disorder (OCD), as well as Attention-Deficit/Hyperactivity Disorder (ADHD). This triple threat often becomes the most challenging aspect of Tourette's.

Children with Tourette's and OCD may be afraid of germs or disgusted by spit. One child in the HBO documentary I Have Tourette's But Tourette's Doesn't Have Me says he has to touch everything an even number of times, while another says looking at sharp corners makes his eyes hurt.

Amanda says it feels like her OCD has taken over her life. "[OCD] makes me feel like I'm not wanted in this world," she says.

Jasper's OCD causes him to fixate and become obsessed with simple things like buying a new bike or getting an archery set.
Amanda, Jasper, Colin and Oprah

Tourette's syndrome is a mysterious disorder—to scientists and the general public. Amanda, Jasper and Colin chose to be in HBO's documentary, I Have Tourette's But Tourette's Doesn't Have Me, so they could show everyone that children with their disease are just like every other kid in school.

Jasper: We're average human beings with a drawback.

Colin: We put on our pants the same way that everybody else does. Except maybe sometimes we're shaking our head or saying "metal."

Amanda: I wanted people to know that we [are] just as normal as any other kid that walks in the school each day. We dress the same. We do things the same. I just want people to know that people with Tourette's … they're not different. They're just plain old regular people.
Vicki, Amanda's mother

Currently, there are no scientific tests to determine if a person has Tourette's. Many times, parents, doctors and teachers blame disciplinary problems for a child's erratic behavior…instead of the true cause.

Vicki, Amanda's mother, says she noticed that Amanda was waking up angry every morning when she was only 4 years old. She took her daughter to a physician, who prescribed stricter punishments at home.

"The doctor felt like it was a discipline problem," Vicki says. "It made me feel like I was a bad parent."

Time outs and spankings didn't stop Amanda's outbursts and excessive knuckle-cracking, Vicki says. Finally, in the third grade, Amanda had an outburst in school and was sent to a psychologist. After months of testing, she was diagnosed with Tourette's.

Vicki urges parents of children with similar behaviors to seek professional help. "I was disciplining [Amanda] for something she had absolutely no control over, and I had no clue," she says.