As reported by The Hartford Courant, July 19, 2005.

Speaking Sickness

By William Hathaway

Phyllis S. Peterson's voice has betrayed her for decades. The 75-year-old Portland resident has a neurological condition called spasmodic dysphonia, which has reduced her speech to puffs of words she can only force out slowly and quietly.

For nine weeks, Khalid El-Sayed's voice has taken a vacation. The third-year University of Connecticut medical student from New Britain hopes that treating his acid reflux will restore his voice before he begins a rotation next month at Hartford Hospital.

Although research and imaging technology have given doctors much clearer insights into the workings of the human voice, much about speech - a defining human ability - remains a mystery.

While doctors still are searching for both the cause of Peterson's disease and a treatment for it, many other speech disorders, such as El-Sayed's, can now be diagnosed and treated - and possibly even prevented.

Although the message sometimes gets lost in the clamor of more publicized public health messages, people need to pay close attention to the well-being of their own voices, which can be silenced by stroke, illness, disease or misuse, speech pathologists say.

Cases like Peterson's and El-Sayed's shed light on the importance of speech, said Dr. Denis Lafreniere, director of the Voice and Speech Clinic at the University of Connecticut Health Center.

"Every teacher, lawyer and doctor or person who answers phones can't do their job without speech," he said. "There are people like Pavarotti, for whom an inability to hit a single note is a disaster, and other people who just want to be able to talk to their family."

The public hears little about speech disorders unless a celebrity singer becomes afflicted, doctors say. Few people give their voice a thought - unless they lose it.

"I feel that if I were blind or crippled, people would understand more," Peterson said. "People don't seem to understand how it affects your life."

Peterson's unusual condition, which afflicts about 50,000 Americans, is a neurological disorder that leads to a malfunction of the muscles that control the vocal cords. Her labored speech is a sort of forced march of sound. Through years of practice, she can make her words audible, but they are very soft.

"My husband says he can't hear me," she said. "When I go out to lunch, I have to go someplace that isn't too noisy."

She first experienced problems in high school when she had trouble pronouncing the letter "H." Doctors at the time blamed her condition on the effects of air conditioning, which had just been introduced.

For much of her life, the problem was not much more than a nuisance, but in her 40s, the condition worsened and doctors still could not explain why. Some doctors suggested her disorder might be psychological. Once, a customer in the flower shop where she worked accused her of being drunk.

Even today, patients with spasmodic dysphonia can go years without getting a correct diagnosis, Lafreniere said. In 1978, a pathologist at UConn correctly diagnosed Peterson's ailment. While she was relieved to know it had a name, she was disheartened to learn there was no treatment.

Spasmodic dysphonia is part of a family of neurological disorders known as dystonias - an excessive contraction that can occur in a variety muscle groups, including those that work the eyes, neck or hands. Writer's cramp is perhaps the best known dystonia. In the past decade, researchers discovered that the toxin Botox can successfully treat the adductor type of spasmodic dysphonia, a malfunction of muscles that bring the vocal cords together. Unfortunately for Peterson, Botox does not work on her form of the disease, in which there is an excessive contraction of muscles that keep the vocal cords apart.

"The operating theory is that the larynx is giving the brain incorrect information," Lafreniere said.

Scientists have found it difficult to study voice disorders such as spasmodic dysphonia because there are no animal models on which to test different theories, said Dr. Christy Ludlow of the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health.

The study of how speech disorders originate may shed light on why humans can talk and why great apes, our closest genetic cousins, cannot, said Ludlow, who is conducting brain imaging studies on people with dysphonia.

Understanding the neurological basis of speech may also lead to new treatments for speech problems caused by stroke, traumatic brain injuries and Parkinson's disease, she said.

Many speech disorders, however, do not have a neurological basis and are more susceptible to treatment. For instance, acid reflux, like that suffered by El-Sayed, and allergies can cause lesions or polyps on the vocal cords that affect speech. In fact, speech problems, rather than heartburn, are often the first symptom of acid reflux, Lafreniere said. Treating the underlying problem usually leads to an improvement in speech, he said.

Some common causes of voice problems are overuse - such as by singers or by screaming children - and lingering effects of the colds that cause laryngitis.

In almost all cases, even in some cases of cancer, trained speech pathologists can help patients improve their voices, Lafreniere said.

Imaging technology introduced in the past decade has helped doctors understand the physiology of speech and devise new treatments, Lafreniere said.

"We can look at all the parts separately," he said. "We know what speech is, and what it isn't, and it's all being tied together."

For more information, contact the National Spasmodic Dysphonia Association at www.dysphonia.org or 800-795-6732; and the Spasmodic Dysphonia Association of Connecticut at 203-756-6271.