What is Spasmodic Dysphonia? The condition behind RFK Jr.'s raspy voice

Robert F. Kennedy Jr has been in the news lately after Donald Trump picked him as the country's health secretary, courtesy his controversial takes on healthcare. His voice has also been a topic of discussion of late. The American politician has been public about being diagnosed with spasmodic dysphonia. Earlier this year, Robert F. Kennedy Jr. shared that he has a voice condition called spasmodic dysphonia that causes his ‘terrible’ voice. However, he mentioned that he had ‘a very strong voice’ before developing the condition at 42.

What is Spasmodic Dysphonia?

Spasmodic dysphonia (SD), also known as laryngeal dystonia (LD), is a chronic neurological voice disorder and a focal laryngeal dystonia. It results in involuntary spasms of the muscles that open or close the vocal folds, causing a voice that presents with breaks and strained/strangled quality or breathy quality, depending on the type of spasmodic dysphonia (adductor or abductor).

LD is a neurological disorder that causes the muscles in the voice box to spasm, making it difficult to speak. It can also lead to voice breaks during speaking and make a person’s speech sound tight, strained, or breathy. The condition impacts about 50,000 people in North America.


How to keep LD in check?

LD is a chronic condition that can't be cured, but treatments like medication and voice therapy can help reduce symptoms and improve communication. It's often misdiagnosed as simple voice strain, so it's important to see a specialist like an otolaryngologist, neurologist, or speech-language pathologist for an accurate diagnosis.

Botulinum Toxin Injections: Botulinum toxin is injected into the laryngeal muscles that control the opening (abduction) and closing (adduction) of the vocal folds. The most common brand currently used for spasmodic dysphonia is Botox and it works to eliminate spasms of the muscles that control the vocal folds by blocking nerve impulses at the muscle receptor site which normally signal the muscle to contract. The duration of benefit of Botox varies from person to person but the average length is 3-4 months.

Individuals may experience temporary side effects from Botox injections including breathiness, difficulty swallowing, or pain/soreness at the site of injection. Individuals may be given strategies to cope with these effects by the treating ENT or speech language pathologist at the time of injection.

These side effects typically do not last long, but may be more significant as the dosage of Botox increases. Some ENTs provide the option of unilateral injections, through which only one side of the voice mechanism is injected. This results in less powerful or less duration of the Botox effect, but also with less side effects following the injection.

Sodium oxybate: Although Botox (botulinum toxin) injections are often used to treat LD, researchers from the Massachusetts Eye and Ear hospital say that those are ineffective for up to 40% of patients. Recently, some volunteers who tried the narcolepsy treatment, sodium oxybate, found it eased their speech in a similar way to drinking alcohol, but without intoxication. As per the lead investigator of the research, Dr Kristina Simonyan, their trial gives them hope for a new, effective treatment that can be offered to some of these patients.

Voice Therapy: Although voice therapy cannot cure SD, as it is a neurological disorder, people might be benefitted from re-coordinating the speech subsystems (breathing patterns, phonation, resonance, articulation) and to work in a more efficient way to be able to better manage symptoms of SD including breaks, strain, roughness, breathiness, and effortful voicing.

Voice therapy should incorporate individual goals such as strategies for speaking in groups, speaking on the phone, speaking with less effort, etc. It can provide individuals with education on spasmodic dysphonia, appropriate vocal health habits, in addition to counselling for coping with the quality of life impairments of the disorder.

Surgical Options:

The majority of surgeries are designed to treat adductor spasmodic dysphonia. In Selective Laryngeal Adductor Denervation-Reinnervation (SLAD-R) involves cutting the recurrent laryngeal nerve which innervates the thyroarytenoid and lateral cricoarytenoid muscles and reinnervating the muscles with a different nerve.

In Type II Thyroplasty surgery, the surgeon separates the vocal folds slightly, to result in less severe spasms. This may result in a weaker or breathier voice, but with less severe spasms.

For abductor spasmodic dysphonia, a procedure called Bilateral Vocal Fold Medialization can be considered where a silastic implant or an insoluble injection material is placed either through a surgical incision or with an injection through the front of the neck. If surgery is an option, potential risks and benefits should be discussed with the treating ENT.

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