PHILADELPHIA _ Sara Henya's art is her music, and her instrument is the harp. She makes playing look easy, effortless. Her fingers move like cascading water: fluid, graceful, sure.
But when her fingers are still, well, that's a different story. Her brain barks orders her body is all but helpless to ignore. She may hit herself in the face or on the chest. Maybe she will need to hit her elbows hard against the back of a chair. And then there are the sounds. They erupt out of her.
Profanities. Loud, unwilled. Yet those guttural sounds are as much a part of her as the golden tones she coaxes from her harp.
Henya, a resident of Northeast Philadelphia, is part of a small, largely understudied sisterhood. She is a woman with Tourette's syndrome.
"It's kind of precious to me," said Henya, 24. "If I had to pick whether I would keep it or get rid of it, I would keep it because I feel like my perspective on the world and who I am and how I treat other people is different than it would have been if I didn't have it."
Defined as a neurodevelopmental disorder characterized by involuntary, often repetitive movements and vocalizations called tics, Tourette's is estimated to affect 1 in every 162 children in the U.S., according to research.
But the U.S. Centers for Disease Control and Prevention has reported that as few as half of the children with Tourette's are formally diagnosed.
As with autism and ADHD, males are far more likely to have Tourette's than females _ about four times more likely.
But Anthony Rostain, a Penn Medicine and Children's Hospital of Philadelphia psychiatrist and member of the Tourette Association of America's medical advisory board, says he believes that the social burden of Tourette's is particularly heavy for women.
"They're not supposed to be in any way socially unacceptable," Rostain said. "They have to look good, act right. They have to be perfect in many ways."
Some people such as Henya have the more extreme, stereotypical form of Tourette's. Coprolalia, vocal tics that manifest in cursing, occurs in only about 10% of Tourette's cases. Many others' tics are more subtle, even if they are chronic and pervasive. Tics are also unpredictable, shape-shifting over time. Tourette's has no cure, and there is no medication that works for everyone.
Some people can learn to somewhat control their tics at least briefly, but it is often uncomfortable, even painful to hide them. Highly focused activities, such as playing an instrument or sports, may have the effect of suppressing tics. Athletes with Tourette's include British soccer star David Beckham and former Philadelphia Phillie Jim Eisenreich, who started a foundation for children with the disorder.
