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Rodney Beilby says whenever he tells people what condition he has, they immediately mention singer Celine Dion.
"I say, 'I have Stiff-Person Syndrome", and they go, 'Oh what, you have what Celine Dion has got," he told 9News.
He said the Canadian performer's admission that she lives with the rare neurological condition had been good because it had raised awareness.
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Dion performed at the Paris 2024 Opening Ceremony, despite a new documentary showing harrowing footage of how her illness affects her.
Beilby, 69, from Murwillumbah in the NSW Northern Rivers was diagnosed with the same thing in 2008.
He had developed facial paralysis called Bell's Palsy, which caused "hideous" pain and left him unable to close his right eye, he said.
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After that started to ease, he developed other symptoms.
"Instead of my right eye going back to normal it closed, and when I spoke it sounded like I was really drunk," Beilby said.
His GP sent him to a neurologist at the Gold Coast Hospital for tests.
By this point, he could barely walk.
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Finally, he was given a diagnosis of the condition which medics say affects one in a million people.
"He said to me, 'You have Stiff-Person Syndrome," Beilby said.
"I didn't know what it was."
He was told there was no cure for the condition, which he said was "daunting."
But doctors said they could slow it down.
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Since then he's been having weekly doses of a blood product called intravenous immunoglobulin.
While it comes with gruelling side effects like headaches and sickness, he's stable for now.
He also has Botox injections around his eye to keep it open.
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But despite everything, he even manages to do his garden and spend time with friends.
"It varies on how I am feeling. Some months I am really good," Beilby said.
"I still have a lot of body pain, head pain, I get very unsteady, my speech can get very slurred, but I lead a pretty active life.
"It will progressively get worse and I'll just continue with my treatment."
However, he said people who don't know him can mistake him for having had one too many as he walks around his community.
"I've actually had the police called because people think I'm drunk," he said.
Beilby is able to have his treatment at the Gold Coast's new Tugun Day Medical Unit, which is closer to his home, just over the NSW border.
Gold Coast Health Director of Neurology Dr Sam Heshmat confirmed the condition was "exceedingly rare" and the one in million prevalence means it's likely only around 26 Aussies have the condition.
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He said how it affected patients varied, and early diagnosis and tailored treatments helped.
"The prognosis for individuals with SPS is variable with some patients having a rather stable course of the illness and responding to the existing treatments, while others may have progressive and medically refractory symptoms that lead to substantial disability," he told 9News.com.au.
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Do you have a story? Contact journalist Sarah Swain on sswain@nine.com.au
What is Stiff Person-Syndrome
Stiff-person syndrome is a rare, progressive neurological disorder.
Symptoms may include stiff muscles in the torso, arms, and legs.
Greater sensitivity to noise, touch, and emotional distress, which can set off muscle spasms.
It affects more women than men and can be more common in people with conditions such as Type 1 diabetes.
Doctors don't know what causes it, but it's thought to be linked to an autoimmune response.
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