The Rare Condition That Stole This Woman's Voice
For years Louise Bale had been front and centre at work as a health promotions officer -- until she noticed her voice starting to hiccup.
"I was doing a lot of presentations and conference work and noticed that some sounds weren't coming out very clearly," Bale told ten daily.
Bits were missing, and when the mother-of-two started getting complaints of "poor mobile reception" on calls from a landline, she knew something had to give.
"I went to an Ear Nose and Throat (ENT) doctor who couldn't find anything wrong with me, except that I may have 'overused' my voice," she said.
"After eight months of speech therapy, my therapist finally told me my brain might be sending the wrong message."
For the last 14 years, Bale has been managing 'spasmodic dysphonia' (SD), a rare condition that affects a person's vocal cords.
According to Sydney neurologist Dr Karl Ng, it's one form of dysphonia, a wider medical term for "inappropriate and often sustained contraction of muscles".
"It's a condition where there are involuntary contractions of the muscles of the larynx (or voice box) and can give the voice a strangulated sound," he told ten daily.
For people with SD, it takes great effort and strain to speak.
"The most common way it manifests is when a person speaks and they are interrupted. It feels like their voice box is closing on them," he said.
The condition is rare, affecting an estimated 1 in 100,000 people and most commonly women aged in their 30s.
According to Ng, it’s difficult to diagnose and can often be confused with other voice disorders, such as tremors.
In most cases, there is no underlying cause.
"Most of the time, patients won’t have other medical conditions; it's an isolated issue, but it's debilitating," he said.
Bale is the President of the Australian Dysphonia Network. She said people often won't acknowledge the nature or severity of their symptoms.
"They might just think their voice isn't right and it can take a very long time to talk to a specialist, even before a diagnosis," she said.
Once a diagnosis has been made, treatment focuses on improving the symptoms of the condition that tend to worsen over time, particularly during stress and fatigue. According to Ng, botox -- or botulinum toxin -- is most effective when injected into the larynx “by an experienced neurologist”.
Over the years, this has worked on and off for Bale; the only reason she can speak to ten daily is a successful round of injections.
But this hasn’t always been the case. Bale said her life has profoundly changed through living with SD.
Grappling with a “personal identity crisis”, she was certain at one stage that she would have to leave work.
"I became quite depressed, like my identity was changing ... I worked in an academic circle and felt that I couldn't be taken seriously with a croaky, whispery voice," she said.
With time, Bale learnt to accept her condition, but warned voice issues were often passed off as "a nuisance".
"We might look normal, but when people become conscious of not being understood, or exhausted from the amount of effort that it takes to have a conversation, it becomes very serious," she said.
The Australian Dysphonia Network is holding a voice disorders forum in Sydney on October 27.
Bale will be on Studio 10 this morning.