RFK Jr. says he has spasmodic dysphonia, a voice disorder. What is it?

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Robert F. Kennedy Jr., president-elect Donald Trump’s choice to lead the Department of Health and Human Services, has said he has spasmodic dysphonia. It is a voice disorder characterized by involuntary spasms in the muscles that control the vocal cords, or folds. This causes difficulty in speaking, and a voice that often breaks and sounds strained or strangled.

It is known as a focal dystonia, a neurological movement disorder that affects one specific part of the body. Writer’s cramp, where there are spasms in the hands or fingers, or persistent eye spasms or eye closure are others in the same category.

Spasmodic dysphonia most often develops at midlife – in one’s 30s or 40s – and can be life-altering, particularly for those whose careers depend on speech.

“Most people take their voice for granted until they don’t have it,” said Pryor Brenner, a otolaryngologist in D.C. “It can be very discouraging. People don’t feel comfortable speaking, or don’t want to speak. They are embarrassed. It has a huge impact because they aren’t able to express themselves.”

Moreover, “it’s an invisible condition, meaning others can’t see it,” said Michael M. Johns, professor of clinical otolaryngology at the Keck School of Medicine of the University of Southern California and director of the USC Voice Center. “It’s not associated with any cognitive impairment, and these people look normal to the eye.”

We asked laryngologists about spasmodic dysphonia, its causes and symptoms.

What causes spasmodic dysphonia?

Scientists agree that the disorder is neurological but don’t know its exact cause, according to Dysphonia International. Researchers are still trying to identify which part of the brain is involved and whether there may be a genetic component, according to the organization.

Some cases also may be triggered by a viral illness such as a cold or influenza, or a traumatic life event such as the death of a loved one, Brenner said. “An incredibly stressful event in life can turn it on,” he said.

Andrew Tritter, a laryngologist at UTHealth Houston, said such cases are rare, but they do occur. “I’ve seen them from a traumatic experience to going in for routine surgery,” he said. “I had one patient who woke up with it after she had a hysterectomy. Her voice was terrible, and it became chronic.”

Tritter said for people with spasmodic dysphonia, it “can be frustrating and upsetting to not be understood or heard, or be asked to constantly repeat yourself.”

There also are idiopathic cases, which occur spontaneously with no obvious cause. “It just happens,” Brenner said.

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What are the types of spasmodic dysphonia?

There are three kinds of spasmodic dysphonia:

1. Adductor spasmodic dysphonia is the most common type, which accounts for 80 percent of cases, including Kennedy’s, experts said. It causes sudden involuntary spasms that trigger the vocal cords to stiffen and close. The spasms disrupt the vibration of the vocal cords and the ability to make sounds.

2. Abductor spasmodic dysphonia is less common – accounting for about 20 percent of cases, experts said. It results in involuntary spasms that trigger the vocal cords to open, making vibration impossible and forming words difficult. Also, the open position lets air escape during speech, making the person sound weak, quiet and breathy.

3. Mixed spasmodic dysphonia is very rare and has symptoms common to the other two types.

How is spasmodic dysphonia diagnosed?

An otolaryngologist and speech-language pathologist will evaluate a patient’s symptoms and medical history and visualize their vocal cord movement through a stroboscopy exam, which is an endoscopy through the nose or mouth with a special camera and light that provides a detailed visual of vocal cord vibration to diagnose the condition.

They also will rate voice quality, record the voice to obtain acoustic measures and may palpate the neck to determine the presence of tension in and around the larynx. They may also ask the patient to read or repeat several specific sentences.

At times, the condition can be confused with other vocal issues such as a vocal tremor, Brenner said. But there is a distinction.

“Someone who has a vocal tremor can’t hold a pitch.” he said, describing a wavering that occurs when the person tries. Someone with spasmodic dysphonia, on the other hand, “can usually hold a single pitch but has trouble forming and articulating words.

How is spasmodic dysphonia treated?

Spasmodic dysphonia can’t be cured, experts said. Usually, once someone has it, “it doesn’t fluctuate over time,” Brenner said. “It levels off fairly quickly, with not a lot of variation over the years.”

Also, “I’ve never seen a child with it,” he added.

But there are several treatments, including surgery and voice therapy, though injections with botulinum toxin (Botox) is the gold standard in providing temporary relief, usually for several months, experts said.

It’s an office-based procedure using local anesthesia. Needles are passed into the neck and through the vocal cords, Johns said, and “it helps the vast majority of people become more functional in their lives.”

Botox works by blocking nerve impulses at the muscle receptor site, which normally signal the muscle to contract, and must be repeated periodically. The response varies, but the average relief lasts for about three to four months, according to Dysphonia International.

There can be some side effects, including breathiness, difficulty swallowing and pain at the injection site. Still, “it is a great treatment for most people,” Brenner said.

There also are at least two surgeries available, experts said. “Both are operations on the larynx and vocal cords to try to separate and relax them,” Johns said. “But they are fraught with complications and not considered standard treatment for the condition.”

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