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What is Robert F. Kennedy Jr.’s voice condition? Spasmodic dysphonia

There was a time, before the turn of the millennium, when Robert F. Kennedy Jr. gave an account of himself and the things he cared about. He then remembered his voice as being “exceptionally strong”, so much so that he could fill large auditoriums with his words. No amplification required.

The independent presidential candidate recounts those moments with nostalgia, telling interviewers that he “can’t stand” the sound of his voice today — at times strangled, hesitant and slightly trembling.

The cause of RFK Jr.’s vocal distress? Spasmodic dysphonia, a rare neurological disorder, in which an abnormality in the brain’s neural network causes involuntary spasms of the muscles that open or close the vocal cords.

My voice doesn’t really get tired. This sounds terrible.

—Robert F. Kennedy Jr.

“I feel sorry for the people who have to listen to me,” Kennedy said in a telephone interview with The Times, his voice as strained as it sounds in his public appearances. “My voice doesn’t really get tired. This sounds terrible. But the injury is neurological, so the more I use the voice, the louder it tends to get.

Since announcing his candidacy for president a year ago, the 70-year-old environmental lawyer has spoken in his thin voice only occasionally, usually when asked by a reporter. He told The Times: “If I could sound better, I would. »

DS, as it is called, affects about 50,000 people in North America, although that estimate may be off due to undiagnosed or misdiagnosed cases, according to Dysphonia International, a nonprofit organization that organizes groups support and finance research.

As in Kennedy’s case, cases typically occur in midlife, although increased recognition of DS has led to more people being diagnosed at younger ages. This disorder, also known as laryngeal dystonia, affects women more often than men.

Internet searches for the disease increased, as Kennedy and his deep voice became a fixture in the news. When Dysphonia International published an article answering the question “What’s wrong with RFK Jr.’s voice?” ”, the traffic was at least 10 times higher than that of other articles.

People with DS usually have healthy vocal cords. For this reason, and because some people feel like they are on the verge of tears, some doctors once believed that croaking or breathy vocalizations were linked to psychological trauma. They often prescribed treatment by a psychotherapist.

But in the early 1980s, researchers, including Dr. Herbert Dedo of UC San Francisco, recognized that DS was a disease rooted in the brain.

Researchers have not been able to find the cause(s) of this disorder. There is speculation that a genetic predisposition could be triggered by an event – ​​physical or emotional – that triggers a change in neural networks.

Some people living with DS say the spasms appeared unexpectedly, seemingly unrelated to other events, while others report that they follow an emotionally devastating personal setback, accident, or infection. severe.

Kennedy said he was teaching at Pace University Law School in White Plains, N.Y., in 1996 when he noticed a problem with his voice. He was 42 years old.

His campaigns for clean water and other causes during this time required him to travel the country, sometimes appearing in court or giving speeches. Of course, he lectured in his law classes and co-hosted a radio show. When asked if it was difficult to hear his voice gradually evolve, Kennedy said, “I would say it was ironic, because I made a living from my voice.”

“For years people would ask me if I had suffered any trauma at that time,” he said. “My life was a series of traumas…so nothing in particular stood out.”

Kennedy was approaching his 10th birthday when his uncle, President John F. Kennedy, was assassinated. At age 14, his father was fatally shot in Los Angeles the night he won the 1968 California Democratic primary.

RFK Jr. also lost two younger brothers: David died at age 28 of a heroin overdose in 1984, and Michael died in 1997 in a skiing accident in Aspen, Colorado, while on the slopes with members of his family, including 43 years. old RFK Jr.

It was much more recently, and two decades after the onset of the speech disorder, that Kennedy formulated a theory about a possible cause. Like many of his highly controversial and often debunked statements in recent years, it involved a familiar culprit: a vaccine.

Kennedy said that while he was preparing litigation against flu vaccine manufacturers in 2016, his research led him to the written inserts that manufacturers package with the drugs. He said he saw spasmodic dysphonia among a long list of possible side effects. “That was the first time I realized it,” he said.

Although he acknowledged that there is no evidence of a link between the flu shots he received each year and SD, he told the Times that he continues to consider the flu vaccine flu as “at least one potential culprit”.

Kennedy said he no longer had the flu vaccine documents that triggered his suspicions, but his campaign forwarded a written disclosure for a subsequent flu vaccine. The 24-page document lists commonly recognized side effects, including pain, swelling, muscle aches and fever.

It also lists dozens of less common reactions that users reported experiencing. “Dysphonia” is on the list, although the documents add that “it is not always possible to reliably estimate their frequency or establish a causal relationship with the vaccine.”

Public health experts have criticized Kennedy and his anti-vaccine group, Children’s Health Defense, for making unsubstantiated claims, including that vaccines cause autism and that COVID-19 vaccines have caused an increase in sudden deaths in healthy young people.

Dr. Timothy Brewer, a professor of medicine and epidemiology at UCLA, said an additional study cited by the Kennedy campaign to the Times referred to reported adverse reactions that were unverified and extremely rare.

“We should not downplay the risks or overestimate them,” Brewer said. “These flu vaccines have real benefits that far outweigh the potential harms cited here, so these types of reactions are not worth investigating further. »

Anyone concerned about flu vaccine side effects should consult their doctor, he said.

So what does the research suggest about SD?

“We just don’t know what causes this,” said Dr. Michael Johns, director of the USC Voice Center and an authority on spasmodic dysphonia. “Intubation, emotional trauma, physical trauma, infections and vaccinations are all incredibly common. And it’s very difficult to establish causality with something that’s so common when it’s such a rare disease.

No two people with DS sound the same. For some, the spasms pull the vocal cords too far apart, causing breathy and almost inaudible speech. For others, like Kennedy, the muscles of the larynx pull the vocal cords together, creating a strained or strangled delivery.

“I would say it was a very, very slow progression,” Kennedy said last week. “I think my voice was getting worse and worse.”

There were times when mornings were particularly difficult.

“When I opened my mouth, I had no idea what was going to come out, if anything,” he said.

One of the most common treatments involves injecting Botox into the muscles that connect the vocal cords.

Kennedy said he received Botox injections every three or four months for about 10 years. But he called the treatment “not right for me” because he was “super sensitive to Botox.” He remembers completely losing his voice after the injections, before it returned a few days later, a little softer.

Seeking a surgical solution, Kennedy traveled to Japan in May 2022. Surgeons in Kyoto implanted a titanium bridge between his vocal cords (also called vocal folds) to prevent them from squeezing together. others.

He told a YouTube interviewer last year that his voice was getting “better and better,” an improvement he attributed to surgery and alternative therapies, including chiropractic care.

The procedure has not been approved by American regulators

Johns warned that surgeries with titanium bridges were not always effective or durable and said there had been reported cases of fractures, despite them being implanted by reputable doctors. He suggested that the most promising path to breakthroughs would be to treat “the main disease, which is in the brain.”

Researchers are now trying to locate the places in the brain that send erroneous signals to the larynx. Once these neural centers are located, doctors can use deep stimulation – like a pacemaker for the brain – to block the abnormal signals that cause vocal spasms. (Deep brain stimulation is used to treat patients with Parkinson’s disease and other conditions.)

Long and grueling presidential campaigns have stolen the votes of many candidates. But Kennedy said he’s not worried, since his condition is based on a neural disruption and not his voice box.

“Actually, the more I use the voice, the louder it tends to get,” he said. “It warms you up when I talk.”

Kennedy was asked if the loss of his full voice was particularly frustrating, given his family’s resounding oratorical legacy. He replied, his voice still hoarse, “Like I said, it’s ironic.”

California Daily Newspapers

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