Research downplays other factors, eases stigma for sufferers

Wednesday, March 10, 2010 – CHICAGO TRIBUNE

Alena Kamin will never forget when her son, Jeremy, started stuttering. It was about five years ago, when he was 7.

“It’s heartbreaking because you can’t hide it,” she said, “and first impressions can put people off.”The Buffalo Grove resident long has attributed Jeremy’s condition — a communication disorder in which the flow of speech is interrupted — to a severe berating he took from a teacher just before his stuttering started.

But while environmental factors and stress can play roles in stuttering, new research provides further evidence of a strong genetic component.

Government researchers have discovered the first genes linked to stuttering — a complex of three mutated genes that may be responsible for one in every 11 stuttering cases, especially in people of Asian descent.

The finding is important, experts said, because it shows that stuttering, which affects as many as 1 percent of adults worldwide, is biological in origin and not a result of poor parenting, emotional distress or other nebulous factors that many physicians have cited as causes.

The new study, of stuttering members of a large Pakistani family, was led by geneticist Dennis Drayna at the National Institute on Deafness and Other Communication Disorders and outlined recently in the New England Journal of Medicine.

“The takeaway message of this is stuttering is not a social or emotional disorder,” Drayna said. “It is not the fault of a bad parent, or unwilling child. It is a serious disorder and worthy of treatment.”

News of the new research’s myth-busting outcome came as a relief to Kristin Chmela, founder of the Chmela Fluency Center at the Central Speech and Language Clinic in Long Grove and one of the millions of Americans who stutter.

“When I heard the news, I just sat at my desk,” she said. “It was as big as a mountain. [I felt] tremendous reassurance and relief.”

Next up for researchers will be epidemiological studies to determine who carries the identified gene mutations and a biochemical investigation of how enzymes are affected.

The Illinois International Stuttering Research Program through the University of Illinois at Urbana-Champaign is also making strides in connecting genes to stuttering.

“We’re looking at something promising right now, that may not agree or disagree, but supplement this study,” said the program’s director, Dr. Nicoline Ambrose.

Drayna said the main misconception of the biological component discovery is that it will result in an immediate cure. His work could lead to expanded treatment options.

“It is possible to imagine enzyme-replacement therapy as a treatment for stuttering in the future,” he said.

The research could also help identify those children who could develop stuttering for early intervention and possible prevention.

In the meantime, those with the speech condition can find help in tried-and-true tools like stretching words, self-correction, pausing and making eye contact. Medications are also sometimes incorporated in treatment, with promising pharmaceuticals also emerging.

A New York-based nonprofit that provides information and advocacy — Friends, the National Association of Young People Who Stutter — will host its 2010 annual convention in July at the Embassy Suites in Rosemont.

“For children, the conventions are life-changing because they take cues from panels discussing how they overcame stuttering problems,” said Friends’ co-founder Lee Caggiano.

Chmela says there will also always be a place for treatments such as her Camp Speak Up, which weaves speech therapy into general camp activities. It takes place this year Aug. 11-15 at Camp Duncan in Ingleside.

“There’s still a need to learn how to manage stuttering and deal with the negative attitudes around it,” she said.

Jeremy Kamin attended the camp last year. He said being with others who stuttered made him realize he was not alone.

“I honestly don’t like stuttering,” he said, “but I like that I am a little different from other people.”

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