Additional spotlight has been cast on dystonia lately, thanks to one of this season’s MasterChef competitors speaking up about having the disorder. A Season 5 contestant of FOX’s cooking reality show, Jaimee Vitolo, who has successfully avoided elimination in the show thus far, explains her “voice issue and awkward movements” to viewers as symptoms of the movement disorder.
On August 11, Vitoli announced on Facebook, that she was recently diagnosed with the neurological disorder, which causes muscles to involuntarily spasm and contract.
Focal dystonia affects only a specific area of the body or set of muscles and may be task-specific, like writer’s cramp. Vitolo and others with spasmodic dysphonia—or laryngeal dystonia—have uncontrollable spasms specifically in the muscles of the larynx only while trying to speak. These spasms cause interruptions in the sound of one’s voice.
“I have spasmodic dysphonia, which causes my voice to break, sound weak, and even be painful to speak,” Vitoli wrote. She said she also has another type of dystonia, presently unidentified, which is responsible for continuous muscle contractions, aching joints and clumsiness.
Dystonia is the third most common movement disorder, after Parkinson’s disease and essential tremor. According to the National Spasmodic Dysphonia Association, an estimated 50,000 people live with this type of focal dystonia in North America.
Award-winning NPR radio host Diane Rehm also has spasmodic dysphonia (or SD), which nearly ended her voice-dependent career in 1998. Her condition first manifested as coughing, and later tremors, while speaking. After receiving successful treatment, including voice therapy and Botox treatments to the affected muscles, Rehm sought to spread awareness as she returned to The Diane Rehm Show after an absence of four months.
Nightline ABC dedicated an entire episode of the program to Rehm’s discussion about living with the disorder. The radio show host also recounts the physical and emotional struggle with SD in her book, Finding My Voice.
Since returning on air, Rehm’s show has grown into one the most popular public broadcasting programs after more than 30 years on air.
Despite her altered voice, of which listeners have taken note, Rehm believed there was hope. “I can keep doing [the show]. I can keep talking about it,” she said. “The doctors will keep learning about it.”
Vitolo shares Rehm’s optimism. “Treatment is underway, and it looks promising!” she writes.
While there are treatments for different types of dystonia, the cause of it is still uncertain, and there is currently is no cure. Boosting awareness about the debilitating movement disorder, which affects more than 250,000 people in the United States, is key to funding more research and knowledge about dystonia. This is why there is a petition, starting September 1, asking the White House to officially recognize September as Dystonia Awareness Month. Please consider signing the petition and help to bring greatly needed attention to this complex disorder.
Learn more about the petition here: http://www.dystonia-parkinson.org/events/dystoniapetition
MasterChef airs on FOX on Mondays, 8 p.m. EST/PST, and 7 p.m. CST.