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 then recalls that his voice was unusually powerful, so much so that he could fill large halls with his words. No reinforcement needed.

The independent presidential candidate talks somewhat sensibly about those times, telling interviewers that he can’t stand the sound of his voice, which is 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.

I feel sorry for the people who have to listen to me,” Kennedy said in a telephone interview with The Times, his voice sounding as tense as it had been during his public appearances.

Mine

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 the presidency 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, as it is also known, affects about 50,000 people in North America, although that estimate may be inaccurate due to undiagnosed and misdiagnosed cases, according to Dysphonia International, a nonprofit organization that organizes support groups and helps fund 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 disorder

,

Also known as laryngeal dystonia, it affects women more often than men.

Internet searches for the condition have increased dramatically as Kennedy and his gravelly voice have become a regular 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 ten times the traffic of other articles.

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.

https://youtu.be/vDiVR8ECOgs?si=MJ-bySxLn0oHpMaU

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 a physical or emotional event 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 taught at Pace University School of Law in White Plains.

New York NY,

in 1996 when he said he first noticed a problem with his voice. He was 42 years old.

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

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

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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 shot dead

in Los Angeles, 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 old RFK Jr.

It was much more recently, and twenty years after the speech disorder first appeared, that Kennedy came up with a theory about a possible cause. Like many of his other highly controversial and often debunked statements in recent years, it involved a well-known cult of 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.

Although he acknowledged there is no evidence

of a connection

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.”

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

It also lists dozens of other, less common reactions that users said they experienced. Dysphonia is on the list, although the paperwork shows it is not always possible to reliably estimate its frequency or establish a causal link with the vaccine.

Public health experts have previously condemned Kennedy and his anti-vaccine group, Childrens Health Defense, for pushing 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 additional research cited by the Kennedy campaign to The Times referred to reported side effects that were both unverified and extremely rare.

‘We should not minimize or exaggerate the risks’

said

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’s very difficult to draw a causal link on something that is so common, when this 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 was very, very slow progress,” Kennedy said

this week last week

. I think my voice was getting worse.”

There were times when mornings were particularly difficult.

“When I opened my mouth, I had no idea what would 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 said the treatment was not suitable for me because he was super sensitive to the Botox. He remembers losing his voice completely after the injections, before it returned, somewhat more smoothly, in the days that followed.

In search of a surgical solution, Kennedy traveled to Japan in May,

by

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 told a YouTube interviewer last year that his voice was getting better, an improvement he attributed to the surgery and 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 that in some cases there have been fractures in the devices despite being implanted by reputable doctors. He suggested that the more promising avenue for future breakthroughs will be to treat the primary condition, namely the brain.

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

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Long and grueling presidential campaigns have stolen the votes of many

presidential

candidates. But Kennedy said he isn’t concerned because his condition is based on a neural disorder and not a disorder in his larynx.

The more I use the voice, the stronger it becomes, he said. It’s getting warmer as I speak.

Kennedy what

a

wondered whether the loss of his full voice was particularly frustrating, given his family’s legacy of loud oratory. He replied, his voice still hoarse, like I said, it’s ironic.