Rodney Beilby admits whenever he tells them 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.He had developed facial paralysis called Bell's Palsy, which caused "hideous" pain and left him unable to close his right eye, he said."Instead of my right eye going back to normal it closed, and when I spoke it sounded like I was really drunk," Beilby said.'I was lucky to be able to lie beside him.
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."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.
It affects more women than men and can be more common in people with conditions such as Type 1 diabetes.
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