What is Robert F. Kennedy Jr.'s voice disorder? Spasmodic dysphonia

There was a time before the turn of the millennium when Robert F. Kennedy Jr. gave detailed accounts of himself and the things he cared about. He remembers his voice at the time as being 'unusually powerful', so much so that he could fill large halls with his words. No reinforcement needed.

The independent presidential candidate talks about those times somewhat wistfully, telling interviewers that he “can't stand” the sound of his voice today – sometimes choked, hesitant and slightly trembling.

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

My voice doesn't really get tired. It just 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 during his public appearances. “My voice doesn't really get tired. It just sounds terrible. But the injury is neurological, so the more I use my voice, the stronger it becomes.”

Since announcing his bid for president a year ago, the 70-year-old environmental lawyer has discussed his ragged voice only occasionally, usually when a reporter asked him about it. He told The Times: “If I could sound better, I would.”

SD is known to affect approximately 50,000 people in North America, although that estimate may be inaccurate due to undiagnosed and misdiagnosed cases, according to Dysphonia Internationala non-profit organization that organizes support groups and funds research.

As with Kennedy, cases typically arise in middle age, although increased recognition of SD has led to more people being diagnosed at a younger age. The condition, also called laryngeal dystonia, affects women more often than men.

Internet searches for the condition have increased dramatically as Kennedy and his gravelly voice have become a major part of the news. When Dysphonia International posted an article answering the question, “What's wrong with RFK Jr.'s voice?” it received at least 10 times as much traffic as other items.

Those with SD usually have healthy vocal cords. Because of this, and the fact that some people sound like they are on the verge of tears, some doctors once believed that the croaking or breathing sounds were related 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 SD was a condition rooted in the brain.

Researchers have not been able to find the cause or causes of the condition. It is speculated that a genetic predisposition could be caused by an event – ​​physical or emotional – that triggers a change in neural networks.

Some living with SD say the spasms came out of the blue and were seemingly unrelated to other events, while others report that it followed an emotionally devastating personal setback, an injury accident, or a serious infection.

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

His campaigns for clean water and other causes at that time saw him travel around the country, sometimes appearing in court or giving speeches. He, of course, gave lectures during his law studies and co-hosted a radio program. When asked if it was difficult to hear his voice gradually transitioning, Kennedy said, “I would say it was ironic, because I made my living with my voice.”

“For years, people asked me if I had had any trauma at the time,” he says. “My life was a series of traumas… so there was nothing in particular that stood out.”

Kennedy was just approaching his tenth birthday when his uncle, President John F. Kennedy, was assassinated. At the age of 14, his father was shot dead in Los Angeles on the night he won California's 1968 Democratic primary for president.

RFK Jr. also lost two younger brothers: David died at age 28 from a heroin overdose in 1984 and Michael died in 1997 in a skiing accident in Aspen, Colo., while on the slopes with family members, including the then 43-year-old . old RFK jr.

It was much more recently, and twenty years after the speech disorder emerged, that Kennedy came up with a theory about a possible cause. As with many of his highly controversial and often debunked statements in recent years, it involved a known culprit: a vaccine.

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

While he acknowledged there is no evidence of a link between the flu vaccines he once received annually and SD, he told The Times he still considers the flu vaccine “at least a potential culprit.”

Kennedy said he no longer has the flu vaccine paperwork that raised his suspicions, but about his campaign sent a written notice for a later flu vaccine. The 24-page document lists commonly recognized side effects, including pain, swelling, muscle aches and fever.

It also includes dozens of less common reactions that users said they experienced. “Dysphonia” is on the list, although the paperwork adds that “it is not always possible to reliably estimate its frequency or establish a causal relationship to the vaccine.”

Public health experts have criticized Kennedy and his anti-vaccine group, Children's Health Defense, for advancing unsubstantiated claims, including that vaccines cause autism and that COVID-19 vaccines will cause a spike in sudden deaths among healthy young people caused.

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 side effects that were unverified and extremely rare.

“We should not minimize or exaggerate the risks,” Brewer said. “With these flu vaccines, there are real benefits that so far outweigh the potential harms cited here, so it is not worth further considering these types of responses.”

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

What does research suggest about SD?

“We just don't know what causes it,” says 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 things that are incredibly common. And it is very difficult to draw a causal link on something that is so common, when it is a condition that is so rare.”

No two SD patients sound the same. For some, spasms push the vocal cords too far apart, causing hoarse and almost inaudible speech. In others, like Kennedy, the laryngeal muscles push the vocal cords closer together, causing a tense or strangled delivery.

“I would say it's been very, very slow progress,” 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 for the condition is injecting Botox into the muscles that bring the vocal cords together.

Kennedy said he got Botox injections every three or four months for about a decade. But he called the treatment “not right for me” because he was “super sensitive to the Botox.” He recalled losing his voice completely after the injections, before it would return somewhat more smoothly days later.

In search of a surgical solution, Kennedy traveled to Japan in May 2022. Surgeons in Kyoto implanted a titanium bridge between his vocal cords (also called vocal cords) to prevent them from pressing against each other.

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

The procedure has not been approved by regulators in the US

Johns warned that titanium bridge surgery has not always been effective or durable and said there have been reports of the devices breaking despite being implanted by reputable doctors. He suggested that the more promising avenue for breakthroughs will be to treat the “primary condition, which is in the brain.”

Researchers are now trying to find the locations in the brain that send erroneous signals to the larynx. Once those neural centers are in place, doctors can use deep stimulation – like a brain pacemaker – 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 isn't concerned because his condition is based on a neural disorder and not a disorder in his larynx.

“Actually, the more I use the voice, the stronger it becomes,” he said. “It gets warmer when I talk.”

Kennedy was asked whether the loss of his full voice felt particularly frustrating, given his family's legacy of loud oratory. He replied, his voice still hoarse, “Like I said, it's ironic.”

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