Kennedy's Voice Draws Attention to Rare Disorder

When Robert Kennedy Jr. appeared on "Larry King Live" Monday, he hoped to gain attention for energy conservation. But as the public listened to his stilted, strained voice, he also drew attention to another cause.

Following the broadcast, Internet forum questions about his health multiplied. Was it a cold, or was it something serious like lung cancer? What made him sound as if he was choking up?

In truth, Kennedy has a condition called spasmodic dysphonia, a specific form of an involuntary movement disorder called dystonia that affects only the voice box.

Requests for comment and calls to Kennedy's press representative at his Pace Environmental Clinic office were not returned.

Although the condition is by no means life-threatening, it is life-changing for the few who have it. Spasmodic dysphonia experts estimate the condition affects only .02 percent of the population. It often strikes in midlife between ages 20 and 50, and it appears in women twice as often as in men.

Patients say losing your voice hits people in their primary, intimate connection to the outside world and affects nearly every aspect of their lives.

For the few doctors who study the rare disorder, it is an uphill battle to get it diagnosed, understand its causes and train doctors across America to treat it.

You can hear audio of people with adductor spasmodic dysphonia and the less-common abductor spasmodic dysphonia at the National Spasmodic Dysphonia Association Web site

Hear It Coming

Lorraine Rappaport started noticing her voice changing back in the early 1980s when she was working as a school counselor in California.

"It came on gradually; it isn't like anything that happens overnight," said Rappaport. "My voice got very hoarse, and there were certain letters of the alphabet at the beginning of words that I could not say easily."

Slowly, her condition started to interfere with her job and her communication with others.

"There were times where I had to stop and think, because I wanted to avoid a word because I couldn't say it clearly."

Rappaport started avoiding words that began with "h," "ch," "k" or "c" -- a difficult task in English. She had never heard of spasmodic dysphonia at the time, and physicians kept telling her the problem was psychological, especially since she was getting a divorce.

"Good heavens, I went to a total of 22 different people," Rappaport said. "I was told to go to a psychiatrist, and my husband at the time was a psychiatrist -- he recognized immediately this was not a psychological condition"

Although emotional stress didn't cause the problem, Rappaport quickly discovered that the problem caused emotional stress. Everywhere she goes her breathy, stilted voice draws attention. She now holds support groups for people with general dystonia -- some of whom can't control their vocal cords and have uncontrolled spasms in their head, neck, eyes, or leg spasms.

"It's really, really bad when you first deal with it," Rappaport said. "If you stop and think about it you realize your personality, your life is a result of what you can say, of what you can speak."

Rappaport eventually left her job because of the spasmodic dysphonia. Once she started the support group she realized social isolation was a common problem.

"Speaking with them, we all did the same thing; we just let go of any social life at all because you couldn't talk," she said.

Rappaport gets worried when she thinks others are going undiagnosed as well.

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