BEVERLY HILLS (CBSLA.com) — Jordan Kramer, 14, is currently homeschooled because he doesn’t want his condition to distract his peers.
Jordan has Tourette Syndrome, a neurological disorder with his brain that he says makes him do things he can’t necessarily control.
“You can feel it coming. You can’t always stop it,” Jordan said. “I scream like that and it’s hard to focus. And it definitely makes it hard for other kids to focus.”
“It takes a lot of strength to be able to live with a condition like this and be able to succeed,” said Dr. John Piacentini, a UCLA psychologist and researcher. He says the tics caused by Tourette are similar to seizures.
“A child with Tourette’s is at a severe disadvantage because of teasing, because of stigma,” Dr. Piacentini said.
It’s an experience that Paul Devore is familiar with. The CEO of FMH Partners, a financial and estate planning firm based in Encino, is also past president of the Tourette Association of America, an organization working to combat stigma by funding research and awareness programs.
Despite having classic symptoms, Devore had no idea why he made the noises he did for most of his life.
“I wasn’t diagnosed until I think was 45,” he said.
Dr. Piacentini says embarrassment can prevent people from reaching out and getting a diagnosis so it’s important to recognize what Tourette symptoms can look like.
“Eye blinking, head shaking, shoulder movements,” Dr. Piacentini said, listing possible symptoms, which can also include throat clearing, sniffing or verbalizations. These ticks are always involuntary, much like a sneeze.
Therapy has helped Jordan cope with his tics and explain them to others.
“I’m a normal kid. I don’t like doing it, but I can’t stop doing it,” Jordan said. “So I’ve learned to live with it.”
Jordan went public with his condition to help make a difference.
“So everyone feels normal. So when someone does something weird, it’s not like ‘Oh, what’s wrong with him?’ It’s ‘Oh, he just has Tourette’s,’” Jordan said.
Devore said he succeeded to become exceptional in school and in business. Apparently many people who have Tourette’s also have obsessive compulsive disorder.
“Yes, I have OCD. Yes, I am a perfectionist,” Devore said. “That’s good and bad. My clients love it.”
And with some of that money he’s made, Paul has donated thousands to UCLA and other Tourette Syndrome research programs.
“I want to serve people,” Devore said.
Jordan is also succeeding. Like Devore, he obsessively follows the stock market and has become exceptional at managing money.
He hopes his openness will help younger kids, the way Paul’s openness and generosity have made a difference for him.
“I want to say a big thank you to him,” Jordan said.
Jordan says if anyone with a tic disorder should speak up and get help. Anyone who sees a tic in someone else shouldn’t stare.
“Ask, ‘What are you doing? Why are you doing this?’” Jordan said. “Treat him or her the same way you would treat anyone else.”
Psychotherapy can often help people with Tourette’s cope with their tics and make them more manageable. Medication is also sometimes used, but it doesn’t work for everyone.
Produced by Gerri Shaftel Constant, CBS2 Medical Producer