Stuttering: It lurks in DNA

Recent research has given millions of Americans hope that they can do more than merely manage the disorder.

When Cameron Coppen is enjoying his quieter adventures — playing basketball with his friends, Wii with his family or catch with his two dogs — this Louisville, Ky., boy with a gangly frame and tousled blond hair seems just like any other 10-year-old.

“When Cameron opens his mouth, though, his words come out in a stutter,” said his mother, Stephanie Coppen, co-chair of family programs for the National Stuttering Association in New York. “He has struggled with this problem from the age of 4, even though he’s been going to speech therapy twice a week since that time.”

Cameron’s condition — and that of the 3 million other Americans who stutter — is in the spotlight more than ever, thanks to the Oscar-winning film “The King’s Speech,” which chronicled how England’s King George VI overcame his all-too-public stutter. And this week, during National Stuttering Awareness Week, people affected by stuttering are raising awareness about recent scientific breakthroughs that show stuttering has a biological component — research that could lead to genetic tests and prescription drugs for the disorder.

Stuttering, a disorder that causes people to repeat or prolong syllables and disrupt their normal flow of speech, can sometimes be overcome through intensive coaching or speech therapy, as shown by the success cases of famous former stutterers: singer Carly Simon, actor James Earl Jones and Vice-President Joe Biden.

“We have breathing techniques and electronic devices that improve fluency, but if we had medications that treated the physical cause, that would help even more,” said Jane Fraser, president of the Stuttering Foundation, in Memphis, Tenn.

Like Cameron, whose cousin and grandmother have suffered from speech problems,  Fraser is living proof of stuttering’s genetic component. The condition has run through four generations of her family, with one uncle, one aunt and two cousins currently affected. “My father, who stuttered severely, felt that if he had just worked harder, he would have been able to overcome this challenge,” said Fraser. “But he might have taken a different view — and no longer continued to blame himself — had he known this was physical and not just psychological.”

Colin Firth as the speech-challenged King George VI in "The King's Speech." Photo: ©2010 The Weinstein Company

Proof that stuttering is physical came in 2009, when Chinese scientists determined that the brains of people who stutter have elevated levels of dopamine, a neurotransmitter known as the “feel-good chemical” because it creates sensations of well-being. “Irregular dopamine levels were linked to genetic mutations in stutterers,” said Gerald Maguire, an associate professor of clinical psychiatry and the Kirkup chair of stuttering treatment at the University of California at Irvine School of Medicine. “Indeed, dopamine may play a role in up to 70 percent of stuttering cases.”

Problems with three other genes likely cause stuttering in an additional 9 percent of cases, found a 2010 study at the National Institute of Deafness and Other Communication Disorders. “All three of these genetic glitches affect how cellular components in the brain are broken down and recycled,” said lead researcher Dennis Drayna, a geneticist at the institute. “The enzymes in key brain cells either don’t function, or are misrouted to the wrong part of the cell.”

Since they realized that stuttering is linked to brain chemistry, scientists have discovered that the drugs asenapine, olanzapine and risperidone, which all affect neurons in the brain, are clinically effective in treating it. “The Food and Drug Administration has yet to approve these drugs for this use, but some doctors are prescribing these medications ‘off-label’ to stuttering patients,” Maguire said. “Doctors are allowed to do this because the FDA has already sanctioned these drugs as safe and effective for other uses.”

Could more stuttering treatments evolve from genetic research? Experts say the answer is likely yes and are giving closer scrutiny to the genes they’ve already isolated, testing a fourth drug called pagoclone, and examining whether implanting electrodes in the brain—recently approved to treat people with obsessive-compulsive disorder — can also help curb stuttering.

“Years ago, when I told Cameron there was no cure for his problem and that he might have it his whole life,  he cried,” Stephanie Coppen said. “Like King George, he’s made progress in controlling his condition and has come to accept that it’s part of who he is. But it would be wonderful if he could some day be free of stuttering thanks to medication or another cure.”

Molly M. Ginty is an award-winning health reporter who has written for Ms., On the Issues, Women’s eNews, PlannedParenthood.org, Yoga Journal and RHRealityCheck.org.

 
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Comments

  • reader

    The Web site for the Stuttering Foundation is http://www.StutteringHelp.org

  • Hey Mikey

    I have found great articles on stuttering research on the website of the Stuttering Foundation (www.stutteringhelp.org) that I have a lot of faith in. Some articles I read on the subject aren’t always in synch with me. I would like to mention that the Stuttering FoFoundation has a Spanish-language version of its site at http://www.tartamudez.org.

    I predict in the next few years that the majority of the cases of stuttering will have a proven genetic link. That day is coming soon.

  • http://www.facebook.com/people/Abdul-Khaliq-Alemao/100001587034654 Abdul-Khaliq Alemao

    What about environmental pollutants that effect genetics?

  • http://twitter.com/WeStutterNSA NSA

    From the research that has been done, many children who stutter may outgrow their stuttering as they get older. However, if they do not, there is support for kids who stutter as well as their parents.

    As a person who stutters, I find that emotional support is just as important as therapy. For 35 years the National Stuttering Association (NSA) has connected kids and adults who stutter through local chapter meetings, workshops, on-line support groups and annual conferences in which over 600 people who stutter attend each year – including such keynote speakers as VP Joe Biden, Arthur Blank (Owner, Atlanta Falcons), Annie Glenn, John Melendez and John Stossel.

    The NSA also offers on-line and phone support for parents of children who stutter as well as publish tons of great brochures, pamphlets and other reference materials for both people who stutter and professionals. To learn more, visit http://www.westutter.org.

  • http://twitter.com/WeStutterNSA NSA

    From the research that has been done, many children who stutter may outgrow their stuttering as they get older. However, if they do not, there is support for kids who stutter as well as their parents.

    As a person who stutters, I find that emotional support is just as important as therapy. For 35 years the National Stuttering Association (NSA) has connected kids and adults who stutter through local chapter meetings, workshops, on-line support groups and annual conferences in which over 600 people who stutter attend each year – including such keynote speakers as VP Joe Biden, Arthur Blank (Owner, Atlanta Falcons), Annie Glenn, John Melendez and John Stossel.

    The NSA also offers on-line and phone support for parents of children who stutter as well as publish tons of great brochures, pamphlets and other reference materials for both people who stutter and professionals. To learn more, visit http://www.westutter.org.

  • Stuttermarc17

    Excuse me but Stuttering is a complex disorder it’s not only physical behaviors it’s cognitive behaviors as well have to be addressed to have Freedom of stuttering. Note I mean freedom of stuttering because everybody have normal dysfluency they repeat words, ums, and ahhs. But don’t fall under the category of stuttering. 

  • Vinay Yadav

    stammering can also be genticcoz my father too a stammer so do i