Ten years ago, Bev Matthews began to notice her voice faltering.
When she talked on the phone or met with her co-workers at the municipal power company where she works in Indianapolis, it was hard to speak.
"I thought something had triggered my self confidence to drop," she says. "I kept trying to find ways to improve that, reading self-help books, anything to try to figure out, what's going on here? What's causing my voice to give out on me?"
She saw one doctor after another. It would be months before someone finally referred her to the Voice Clinic of Indiana. Doctors administered more tests and, finally, a diagnosis. Matthews had spasmodic dysphonia.
"I had never heard of it," Matthews recalls. "I went on the internet to try to research everything."
Typically when people hear my voice, they think I have a cold or that I'm sick.
The diagnosis seemed spot on.
Spasmodic dysphonia is a rare disease that affects the vocal chords. It leads to a voice that sounds strained, whispery or breathy. Spasms that sometime silenced her voice altogether.
It was a relief on one hand to finally begin to understand the problem. But Matthews says living with a disorder few people know about isn't easy.
"Typically when people hear my voice, they think I have a cold or that I'm sick, which I want to dispel because I don't want them to think I'm sick. But sometimes it's easier just to say 'Yeah, I've got a cold' than to explain spasmodic dysphonia," Matthews says.
Spasmodic dysphonia strikes seemingly at random, causing people to lose their voice, but often only when they try to speak normally. Some people can still sing, whisper or speak in accents.
It's these anomalies that puzzle researchers who can't seem to figure out what's causing the disorder or why it only affects certain parts of speech.
IU Health Neurologist Jay Bhatt says prevention is tough when doctors still don't understand the cause.
"We do know that there is a short circuit in the brain and it's in the area called the basal ganglia. Now some of them are genetic, so some people are born with these conditions that then develop over time and actually we know some genes that cause this type of dysphonia. Unfortunately, the vast majority of dysphonias that happen, we call them idiopathic and we don't know why they happen," Bhatt says.
The affected part of the brain is very small, and there are only a couple laboratories in the U.S. that have the equipment to see the microscopic areas.
While there is no cure, there are some treatments.
Every few months, Matthews goesto the Voice Clinic of Indiana to get botox injections in her neck muscles.
The drug, which is more commonly used by plastic surgeons to help erase wrinkles, helps calm down the vocal cord spasms that make it difficult to speak.
"Unfortunately the disease waxes and wanes so sometimes we've had patients who have been taking a certain dose for years but all of a sudden it's not working, it's too much or too little," says Voice Clinic of Indiana doctor Noah Parker. "So we have to monitor very closely based on the patient's symptoms and we have to be very honest with them that we're just treating the symptoms of the disorder," Parker says.
Researchers are far from giving up. There are several spasmodic dysphonia studies being conducted across the U.S., including one at Indiana University.
In Rita Patel's lab on IU's Bloomington campus, she's developing a system that records the movements of the vocal cords at a rate more than 130 times faster than typical video. She can then play back the recording much more slowly and actually see the muscle spasms in spasmodic dysphonia patients.
"In some of our studies we've found that within one type of spasmodic dyphonias there are several subtypes. If we can better classify the problem we can deliver even more specific treatments," Patel says.
They might be able to identify the specific muscles that would benefit from Botox for example.
Unfortunately doesn't jump to the radar of leaders who help allocate money.
But spasmodic dysphonia only affects point zero two percent of the population or between 50,000 100,000 people in the United States, so there aren't many people to participate in studies.
"For this initial study we are recruiting 10 individuals with spasmodic dysphonia, so far we have recruited six," Patel said.
Because the disease is so rare, Dr. Batts says funding for research also becomes an issue.
"So it unfortunately doesn't jump to the radar of leaders who help allocate money for different conditions and what is researched," Batt says.
Still, researchers are hopeful studies will soon reveal new, more effective treatments for spasmodic dysphonia, and maybe, one day, a cure. In the meantime, Matthews says there's something else she would like to see.
"Having an understanding, a more global understanding of the population of this disorder helps those who are suffering with it so that people understand when we stutter or when our voice falters or when we're hoarse what's causing us these problems and to be empathetic to people who have voice issues," Matthews says.
Spasmodic dysphonia affects women about twice as often as men. People who use their voice regularly, such as teachers, are also at greater risk, although the disease is still very rare.
