Health and Human Services Secretary Robert F. Kennedy Jr. has attracted a lot of attention for his raspy voice, which results from a neurological voice disorder called spasmodic dysphonia.
Kennedy, 71, says that in his 40s he developed a neurological disease that “robbed him of his strong speaking voice.” Kennedy first publicly spoke of the quiver he had noticed in his voice in a 2004 interview with journalist Diane Rehm, who also had spasmodic dysphonia.
In 2005, Kennedy was receiving shots of botulinum toxin, the neurotoxin that is now used in Botox as well as to treat migraines and other conditions, every four months. This first-line treatment for dysphonia helps to weaken the vocal folds that contract abnormally with this condition. He used botulinum toxin injections for 10 years and then stopped using them, saying they were “not a good fit” for him.
Kennedy initially developed symptoms while in the public eye teaching at Pace University in New York. Some viewers wrote to him suggesting that he had the condition spasmadic dysphonia and that he should contact a well-known expert on the disease, Dr. Andrew Blitzer. He followed this advice and had the diagnosis confirmed.
I am a movement disorders neurologist and have long been passionate about the psychological and social toll that conditions such as dysphonias have on my patients.
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Types of dysphonias
In North America, an estimated 50,000 people have spasmodic dysphonia. The condition involves the involuntary pulling of the muscles that open and close the vocal folds, causing the voice to sound strained and strangled, at times with a breathy quality. About 30% to 60% of people with the condition also experience vocal tremor, which can alter the sound of the voice.
Typically, a neurologist may suspect the disorder by identifying characteristic voice breaks when the patients is speaking. The diagnosis is confirmed with the help of an ear, nose and throat specialist who can insert a small scope into the larynx, examine the vocal folds and rule out any other abnormalities.
Because the disorder is not well known to the public, many patients experience a delay in diagnosis and may be misdiagnosed with gastric reflux or allergies.
The most common type of spasmodic dysphonia is called adductor dysphonia, which accounts for 80% of cases. It is characterized by a strained or strangled voice quality with abrupt breaks on vowels due to the vocal folds being hyperadducted, or abnormally closed.
In contrast, a form of the condition called abductor dysphonia causes a breathy voice with breaks on consonants due to uncontrolled abduction – meaning coming apart of the vocal folds.
Potential treatments
Spasmodic dysphonia is not usually treatable with oral medications and sometimes can get better with botulinum toxin injections into the muscles that control the vocal cords. It is a lifelong disorder currently without a cure. Voice therapy through working with a speech pathologist alongside botulinum toxin administration may also be beneficial.
Surgical treatments can be an option for patients who fail botulinum toxin treatment, though surgeries come with risks and can be variably effective. Surgical techniques are being refined and require wider evaluation and long-term follow-up data before being considered as a standard treatment for spasmodic dysphonia.
Dysphonias fall into a broader category of movement disorders
Spasmodic dysphonia is classified as a focal dystonia, a dystonia that affects one body part – the vocal folds, in the case of spasmodic dysphonia. Dystonia is an umbrella term for movement disorders characterized by sustained or repetitive muscle contractions that cause abnormal postures or movements.
The most common dystonia is cervical dystonia, which affects the neck and can cause pulling of the head to one side.
Another type, called blepharospasm, involves involuntary muscle contractions and spasms of the eyelid muscles that can cause forced eye closure that can even affect vision in some cases. There can be other dystonias such as writer’s cramp, which can make the hand cramp when writing. Musicians can develop dystonias from overusing certain body parts such as violinists who develop dystonia in their hands or trumpet players who develop dystonia in their lips.
Stigmas and psychological distress
Dystonias can cause tremendous psychological distress.
Many dystonias and movement disorders in general, including Parkinson’s disease and other conditions that result in tremors, face tremendous amounts of stigma. In Africa, for instance, there is a misconception that the affected person has been cursed by witchcraft or that the movement disorder is contagious. People with the condition may be hidden from society or isolated from others due to fear of catching the disease.
In the case of spasmodic dysphonia, the affected person may feel that they appear nervous or ill-prepared while speaking publicly. They may be embarrassed or ashamed and isolate themselves from speaking to others.
My patients have been very frustrated by the unpredictable nature of the symptoms and by having to avoid certain sounds that could trigger the dysphonia. They may then have to restructure their word choices and vocabulary so as not to trigger the dysphonia, which can be very mentally taxing.
Some patients with dysphonia feel that their abnormal voice issues affect their relationships and their ability to perform their job or take on leadership or public-facing roles. Kennedy said in an interview that he finds the sound of his own voice to be unbearable to listen to and apologizes to others for having to listen to it.
A 2005 study exploring the biopsychosocial consequences of spasmodic dysphonia through interviews with patients gives some insight into the experience of people living with the disorder.
A patient in that study said that their voice sounded “like some kind of wild chicken screeching out words,” and another patient said that it “feels like you’re having to grab onto a word and push it out from your throat.” Another felt like “there’s a rubber band around my neck. Someone was constricting it.” And another said, “It feels like you have a sore throat all the time … like a raw feeling in your throat.”
Patients in the study described feeling hopeless and disheartened, less confident and less competent. The emotional toll can be huge. One patient said, “I used to be very outgoing and now I find myself avoiding those situations.” Another said, “People become condescending like you’re not capable anymore because you don’t speak well.”
As conditions such as spasmodic dysphonia become better recognized, I am hopeful that not only will treatments improve, but that stigmas around such conditions will diminish.
