What is Spasmodic Dysphonia (also known as laryngeal dystonia) - A Rare Condition That Affects RFK Jr.’s Voice

What is Spasmodic Dysphonia

Spasmodic dysphonia (SD), also known as laryngeal dystonia, is a rare neurological disorder that affects the muscles controlling the vocal cords. This condition results in involuntary muscle spasms in the larynx (voice box) that cause the voice to sound shaky, strained, or even strangled. Spasmodic dysphonia can have an impact on an individual’s ability to speak clearly and be understood, making everyday communication challenging.

There are three main types of spasmodic dysphonia.

• Adductor spasmodic dysphonia is the most common type. The vocal cords suddenly slam together, causing a tight, strained, or strangled voice.
• Abductor spasmodic dysphonia occurs when the vocal cords suddenly separate, resulting in a breathy or weak voice.
• Mixed spasmodic dysphonia is a rare combination of the other two types. In this type, the muscles that open and close the vocal folds are not working properly. Because of this, it has features of both adductor and abductor spasmodic dysphonia.

How Rare is Spasmodic Dysphonia

Spasmodic dysphonia is a rare disorder that can affect anyone. It is estimated to affect about 1 in 100,000 people, making it hard to diagnose. It is often misunderstood by both patients and healthcare professionals, but the first signs occur most often in people between the ages of 30 and 50, and it affects more women than men. The onset can be slow and a person may only have voice trouble occasionally at first. Over time, the voice problems will happen more often and get worse in times of fatigue or stress. Research suggests that it can take 4 or 5 years to receive a diagnosis of SD. Despite being rare, spasmodic dysphonia has gained attention in recent years due to its public recognition through figures such as Robert F. Kennedy Jr. (RFK Jr.),  whose voice has been notably affected by the condition.

What Famous People Have Spasmodic Dysphonia?

One of the most famous people to bring attention to spasmodic dysphonia is Robert F. Kennedy Jr. RFK Jr., United States Secretary of Health and Human Services, has publicly discussed his struggles with this condition. RFK Jr.’s advocacy for environmental and public health issues, alongside his personal experience with the disorder, has shed light on this rare condition and raised awareness among the public.

Other famous people who have lived with spasmodic dysphonia include:

• Scott Andrews - Dilbert cartoonist 
• Diane Rehm - Former NPR Radio Host
• Chip Hanauer - American hydroplane racing driver who was a spokesperson for the NSDA
• Keath Fraser - Canadian fiction author
• Johnny Bush - Late Country Singer
• Rodney Hicks - American Broadway film and TV performer
• Darryl McDaniels - Run DMC rapper

What is the cause of spasmodic dysphonia?

The exact cause of spasmodic dysphonia is unclear. Experts initially believed that it was a psychogenic disorder; however, it is now classified as a neurological disorder.

Like other forms of dystonia, spasmodic/laryngeal dysphonia results from abnormal signals to the brain, particularly within the basal ganglia; the basal ganglia is responsible for controlling voluntary movements. These signals cause the muscles in the larynx to uncontrollably contract, resulting in spasmodic dysphonia. 

In some cases, spasmodic dysphonia can be linked to genetic factors or other neurological disorders, though there is no single known cause. Stress or environmental triggers may make symptoms worse. However, they do not appear to directly cause the condition. Research into the causes of spasmodic dysphonia is ongoing.

Does spasmodic dysphonia ever go away?

At this time, spasmodic dysphonia does not have a cure. The severity of the symptoms may fluctuate with periods of both worsening and improvement. 

While there is no cure, there are various treatments that can help manage the symptoms of spasmodic dysphonia. Although rare and unpredictable, some individuals with this condition experience remission. During this time, their symptoms may lessen or temporarily resolve.

Common treatment options include Botox injections into the laryngeal muscles to reduce spasms, speech therapy, and,d in some cases, surgery. While these treatments can provide relief, the effects are not permanent. They often require ongoing management.

What are the speech therapy goals for spasmodic dysphonia?

While speech therapy cannot cure spasmodic dysphonia, it is beneficial for managing the symptoms and improving communication. 

A speech therapist will work with the individual to assess their symptoms and develop a treatment plan that fits their needs. Speech therapy for spasmodic dysphonia often includes exercises that focus on voice control and diaphragmatic breathing. Controlled breathing can help the individual manage the involuntary spasms, improving speech production. Speech therapy may also include relaxation exercises for reducing vocal strain as well as working on techniques to project their voice without straining it. 

Speech therapy is beneficial in improving a variety of speech disorders, including spasmodic dysphonia. A speech therapist will help you reach your speech goals and feel more confident while communicating. 

To get started with virtual speech therapy, schedule your free introductory call today!