With many misperceptions about spasmodic dysphonia, it can be hard to know what’s true. Dr. Kristina Simonyan, a leading researcher on this condition, shares the ins and outs of the disorder.
Spasmodic dysphonia has been in the news recently, starting with actress Selma Blair revealing her diagnosis of spasmodic dysphonia as a symptom of multiple sclerosis. It later hit news again with the release of the thriller, Us, when actress Lupita Nyong’o said the condition inspired the voice behind her character, which she later apologized for.
Although this vocal condition is now making headlines, there’s still a lot we can learn about it.
The muscles of the voice box, or larynx, generate a person’s voice. When those muscles go into periods of uncontrollable spasms, they interfere with the ability of the vocal folds to vibrate. These involuntary muscle movements selectively impact a person’s ability to talk and can cause the voice to break, leaving people with a tight, strained or breathy voice. When this happens, it is known as spasmodic dysphonia.
“Spasmodic dysphonia can be debilitating for patients,” said Kristina Simonyan, MD, PhD, Dr med, director of Laryngology Research at Massachusetts Eye and Ear. “Imagine having no control over the movement of your muscles, let alone those that power your voice. These patients face this every day and, as a result, are often misunderstood.”
Dr. Simonyan’s research focuses on identifying new causes and treatments for focal dystonias (neurological disorders that cause involuntary muscle spasms), including spasmodic dysphonia. Below she shares common misconceptions about the condition to shed some light on what is and is not true.
1. It is not a psychiatric disorder.
Spasmodic dysphonia was once thought to be a psychiatric problem. Since an underlying cause could not be determined because the larynx looks healthy in patients, medical professionals deemed it a behavioral disorder.
“Not so long ago, patients used to be told that it was ‘all in their head,’” explained Dr. Simonyan. “It is in their head, but just not in the way of a mental illness.”
It wasn’t until researchers and clinicians began to find similarities between spasmodic dysphonia and other forms of focal dystonia that the condition was thought to be a movement disorder that impairs the larynx.
2. It is not contagious.
Spasmodic dysphonia is not contagious at all, but it has led to a lot of unnecessary social isolation for patients. There is a possibility it could be inherited; otherwise, spasmodic dysphonia is not something that will pass from one person to another by the means of communication.
“The exact cause of spasmodic dysphonia is not known, but it is a nervous system disorder, so the root of the condition lies within the brain. Certain illnesses, injury to the voice box or brain, a long period of voice use or stress might trigger it, but nothing that will make it contagious,” said Dr. Simonyan.
3. It is hard to diagnose.
Today, there are no definitive diagnostic procedures or tests for spasmodic dysphonia. A diagnosis is often reached through a process of elimination after seeing many different medical providers.
“On average, it takes five years to receive the correct diagnosis as most patients see three to four specialists for opinions. Being referred to a doctor who has a substantial experience with spasmodic dysphonia is currently a key to early diagnosis,” Dr. Simonyan explained.
4. It is not a terminal illness, but it is a life-long condition.
Spasmodic dysphonia can cause problems that range from difficulty saying a word to not being able to talk at all. This makes patients appear and sound quite sick.
Thankfully, spasmodic dysphonia is not a life-threatening illness. Other than having vocal struggles, patients are generally healthy.
It is probably a life-long illness, however. Treatments today can only temporarily reduce symptoms rather than cure them, although clinicians and scientists are working toward identifying better treatments.
“Patients with spasmodic dysphonia face many hardships, so it is important to get a better understanding of what they are going through,” said Dr. Simonyan.
About our Expert
Dr. Kristina Simonyan directs the Dystonia and Speech Motor Control Laboratory at Mass. Eye and Ear, where she studies the neural mechanisms of normal and diseased speech motor control and other complex voluntary motor behaviors.