What to Know About Spasmodic Dysphonia, the Condition That Affects RFK Jr.’s Voice

Robert F. Kennedy, Jr., President Trump’s nominee to lead the U.S. Department of Health and Human Services, speaks with a raspy quiver in his voice. That’s because he has spasmodic dysphonia, a rare neurological condition that causes the muscles affecting the vocal cords to spasm.

Kennedy has previously spoken about the way the condition affects his life. He “can’t stand” his voice, he told the Los Angeles Times last year. “I feel sorry for the people who have to listen to me,” he said in a phone interview with the outlet. “My voice doesn’t really get tired. It just sounds terrible. But the injury is neurological, so actually the more I use the voice the stronger it tends to get.”

Here’s what to know about how common spasmodic dysphonia is, what causes it, and how it’s treated.

What is spasmodic dysphonia?

Spasmodic dysphonia (SD) is a rare disorder that causes involuntary movements of the voice box, says Saul Frankford, an assistant professor in the School of Behavioral and Brain Sciences at the University of Texas at Dallas who has researched the condition. About 1 in 100,000 people worldwide have it.

There are two main types of SD. Adductor spasmodic dysphonia, which is the kind Kennedy has, means “the vocal folds press too tightly together during speech,” Frankford says. “That causes this raspy or creaky kind of voice, often with voice breaks, as well.” Abductor spasmodic dysphonia, which is less common, causes the vocal cords to suddenly open. “That leads to a breathier kind of voice,” he says.

SD is sometimes referred to as laryngeal dystonia. Other types of dystonia include writer’s cramp and neck dystonia, and both occur during active movements, Frankford says, like knee-jerk contractions in the fingers, hand, or forearm.

What causes spasmodic dysphonia?

People usually develop SD in their 40s or 50s—Kennedy was diagnosed in 1996, at age 42—and scientists aren’t exactly sure what causes it. “It does essentially come out of nowhere,” Frankford says. Some research suggests that people with the condition report having upper respiratory infections or acute periods of stress and anxiety, both of which could play a role in triggering it, he adds.

There’s also a genetic component. The exact percentage of cases in which genetics play a role is unclear, though Frankford estimates around 10% to 20% of people with the condition have family members who have it, too.

Does it affect all kinds of vocal activities?

Spasmodic dysphonia is considered a task-specific type of dystonia, which means it affects regular speech. It’s less likely to impact other types of vocal activities, Frankford says, including laughing, crying, whispering, and sometimes even singing.

How is spasmodic dysphonia diagnosed?

SD is difficult to diagnose. Because it’s so rare, not every doctor knows about it, Frankford says. Research suggests it takes an average of four to five years for patients to get an accurate diagnosis. “There’s a real problem with getting an accurate diagnosis, especially because it both overlaps with and resembles some other more common voice disorders, like muscle tension dysphonia,” he says.

Part of the issue is that there’s nothing physically wrong with the voice muscles. “It’s a neurological disorder, but it’s not something you can see on an MRI scan,” Frankford says. “It’s not like there’s a tumor or stroke or something.” According to Johns Hopkins Medicine, speech-language pathologists often test voice production and quality, and a doctor might check the vocal folds by passing a small tube through the nose and into the voice box.

Is there a cure for spasmodic dysphonia?

SD is a lifelong condition that never goes away. “But it does vary depending on how stressed or tired someone is,” Frankford says.

Are there treatments?

The typical treatment for SD is Botox injections into the larynx muscles. “You inject the muscles of the larynx with Botox, around the vocal folds, and it weakens the muscles,” Frankford says. There are some short-term side effects, like breathiness, but over time, “it actually leads to a more typical voice.” Since Botox wears off after a couple months, however, people typically need to get it done again every two to five months. “You’d have to do this constantly, for as long as it works,” he says. According to NPR, Kennedy said on The Diane Rehm Show in 2005 that he received Botox injections every four months.

Meanwhile, researchers are exploring potential drug options, and there are some surgeries that cut the nerve that controls the movement of the larynx. But they’re not always successful, making surgery a less-than-ideal option. Some people with SD choose to go to vocal therapy, which can help, Frankford says, but “it doesn’t get rid of it.” Voice therapy tends to be more effective for people with muscle tension dysphonia, like teachers who talk all day and then lose their voice.

What is it like to live with spasmodic dysphonia?

Living with SD can be stressful. In studies, up to 62% of people with the condition have been found to have anxiety and depression. And there’s some evidence that there’s an increased risk of suicide in this population.

“Communicating is an important part of the human condition,” Frankford says. “When you’re not able to communicate effectively, or when it’s more challenging, it’s definitely going to take a psychological toll. You don’t want to interact with other people if you don’t think your voice sounds the way you want it to.”

Unfortunately, people with SD are often mocked about the way their voice sounds. Frankford stresses that it’s a neurological condition, which means it’s not anybody’s fault that they have it. Plus, it doesn’t reflect any sort of cognitive or psychological issues. “It’s not like an indication of someone’s cognitive abilities, or their abilities to think and interact with other people,” he says.

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