Mandy Maysey has three children who live with Tourette syndrome (TS) and leads the Tourette Syndrome Association of Australia.
It means her advocacy around the commonly misunderstood condition never takes a day off, or in her words:
"You really live and breathe it."
In Australia, approximately one in every 100 people is diagnosed with TS, but not all people display the same involuntary tics.
"Each case of Tourette's is as unique as the human brain," Ms Maysey said.
TS is a neurodevelopmental disorder that can be experienced as either vocal or motor tics, with symptoms that vary in severity from patient to patient.
Professor Valsamma Eapen, who is head of child and adolescent psychiatry at UNSW in Sydney, is among a relatively small number of TS specialists.
"Motor tics could be blinking, a nose twitch, a shoulder shrug or it could be more complex which would be licking, spitting, jumping or hopping," Professor Eapen explained.
And vocal tics could range from "sniffing, grunting or throat clearing to complex ones which would be involuntarily shouting out an obscene word or something else inappropriate."
While the symptoms can be explained diagnostically as sounds and movements, Ms Maysey said her experience as a mother had taught her there was much more to the story — and Professor Eapen agreed.
'A departure from the person'
Ms Maysey said one of the most difficult aspects of Tourette's for her children was that their tics could make them behave in a way that juxtaposed their true selves.
"My middle child is one of the sweetest and most considerate people and their tics are really nasty and obnoxious," she said.
"So, it's a departure from the person, so to speak."
She said a person who was ordinarily reserved could be burdened with extroverted tics that made them say hello and introduce themselves to strangers.
"They will say, 'hello, hello, hello' but they don't really want to speak to anybody."
Professor Eapen said those struggles made it hard for children with TS to fit in among peers.
"It can result in teasing and bullying or it could be that literally because of the frequency of the tics [the child] … is not able to concentrate," she said.
Unsolicited advice, cruel words
People with little knowledge of Tourette's are surprised when they learn all three of Ms Maysey's children have been diagnosed.
But Professor Eapen said having multiple diagnoses within one family was actually not remarkable, as TS had a genetic predisposition.
"Sometimes there can be multiple family members affected, which means there's a more significant genetic load."
Despite this, Ms Maysey said many people seemed to think that having TS came down to luck.
"They go, 'Oh, three? That's unlucky, poor you'," Ms Maysey said.
She said overall people were nice, and often intrigued, but others had been cruel and aggressive in their ignorance.
"Some people have told me that I shouldn't have bred or that Satan cursed me with disabled children," Ms Maysey said.
"Random people will walk up to you in the street and start praying over you or asking if you've tried crystals or magnesium.
"Someone even told me I must have toxic mould in my house."
She said despite the hurtful remarks, she had never wavered in her advocacy for those with TS.
"We live in 2023 and we don't hide people with disabilities away now."
Patients forced to travel for specialists
As a Canberran living with Tourette syndrome, Shenae Conway knows how little the community understands about the condition.
"[People] know the name, and that's about it, some don't even know what tics are," Shenae said.
They were initially diagnosed with TS outside of the ACT, but said after living in the territory for some time, a distinct lack of Canberra-based specialists had become apparent.
"People, especially children, trying to get diagnosed have to travel in and out of Sydney. There is no neurologist in the ACT that can diagnose Tourette's and no medical professional trained in behavioural therapies," they said.
"I've always had to be the advocate [with doctors] … I have never had any steer or help in my care related to Tourette's, at least not in the ACT."
Ms Maysey agreed and said a lack of awareness in the medical community was perhaps why her youngest child was the first to receive a diagnosis.
"Canberra is one of those places that you will see people travel ... just to see somebody who knows something about Tourette syndrome, which is really sad," she said.
She added that those who did travel then faced lengthy waiting times on top of a 12-month wait that was required before an appointment could even be scheduled.
"You have to have motor or vocal tics present for more than 12 months to qualify for a diagnosis, and once you've got that 12 months under your belt, then you wait for an appointment ... which can take you 18 months to two years," she said.
Calls for national TS guideline
Ms Maysey said "neurologists have always been thin on the ground" and added that she believed most were not interested in TS.
Professor Eapon said a lack of interest in specialising in Tourette's was likely due to the condition featuring in very little of the training in medicine and psychology degrees, as well as Australia having no national TS guideline.
The Tourette Syndrome Association of Australia is lobbying for the creation of a treatment and diagnosis framework for TS, much like the recently released guidelines for people with ADHD.
"I emailed every single MP in Australia to try and get some traction on it this year … and I got one reply," Ms Maysey said.
"It's like beating your head against a wall at times, trying to actually get people to listen."
"It's heartbreaking to think people are suffering purely because the systems aren't in place to be able to help them."
