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.
Recently, 3 of my SD friends and I had a luncheon. Challenges: 1. finding a local doctor from any discipline that can diagnose/understand the disorder.. broaden this dysphonia challenge as a mandatory class in med/nursing school? 2. A way to inform SD people that there are support groups out there for them.. not everyone looks at NSDA on the Internet… (one I met 2 months ago at a WW meeting.) I heard her talking & she was standing in line behind me. When she was finished with her conversation, I requested her to talk to me.. She started talking & I held my hand up.. tho she “sounded” different than me, I said “I has spasmodic dysphonia, do you? She was dumbfounded.. she said yes. She has had SD for almost 40 yrs & I was the 1st person that she had met that had SD as well.. She was so happy… just sayin..
Thank you Dr. Simonyan. I attended the conference in Boston MA. The information you provided was valuable. Thank you and your Team for all of the time and effort you are putting into finding a cure for SD.
Thank you for simplyifying this definition. I have had dysphonia symptoms most of my life. I was a Registered Nurse for > 30 years. My work was very stressful in itself. But communicating with family, physicians, and other medical personnel. I always knew there was something wrong with me. I went to a recommended Darvocet. The placebo pill. I am now 60 years old and also have bleparospasms, osteoarthritis, and hypothyroidism. I feel the
excess stress I put on myself to be able to perform my job well had something to do with my autoimmune diagnoses. I became unable to speak and have muscular spasms in my face in 2005. The year my oldest daughte
Graduated and got married.
Thank you again for your article.
Susan Edge, RN, BSN, retired.
Hello my name is Dianne and I have been diagnosed with SD August 2013. It was something that gradually overtime took affect, I first heard a clicking sound in 2010 from speaking a word staring with the letter “c”. I was very aware of my speech patterns which flowed with ease. Then other sounds particularly my vowels and blends began more difficult to pronounce. In May of 2013, I was stricken to maybe 3 words to no words daily. After persistence of finding the root cause with an ENT I finally was diagnosed and sent to my specialist, Otolaryngologists, Dr. John Sinacori who has treated me since August 2013 with Botox injections every 6-8 weeks. SD has change the way I communicate forever!
Thanks for reading and sharing Dianne, we are sorry and have heard similar stories here. We will continue to update on this research project when there are results, on Focus.
Thank you for your work on this. I was diagnosed with ADSD and vocal tremor one year ago but I knew something was wrong a few years before that. During that time I was under a very stressful family issue and I feel that contributed. I live in Western MT and we have one ENT in my area that works with SD patients. I had one visit with him and he gave me my diagnosis, and then I received the botox treatment. It was a very traumatic experiences, 7 tries because I couldn’t stop swallowing. My voice was good the next day and after that I could not talk or swallow liquid without choking for nearly 4 weeks. I will not do that again. Some days are definitely better than others but it is very isolating. I’ve done some voice therapy and it does seem to help, as well as optimal breathing exercises, plus Connie Pike’s books are helpful.
Are you involved in any clinical trials? I’m somewhat leery to ask this but I’ve read that micro dosing with psilocybin can help. Do you have any knowledge on that?
Hi Sherry, thanks for reading, here is a clinical trial we are running for spasmodic dysphonia. https://rally.massgeneralbrigham.org/study/xyrem
I was blessed to find a great vice therapist, Connie Pike, and voice specialist, Sr. Philip Song at Mass Eye and Ear. I often struggle, but I can make my way.