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Stephanie spent four months in hospital re-learning how to walk and talk. Now she’s tackling a triathlon
Stiff person syndrome is a rare but debilitating condition that not many people know about.
Superstar singer Celine Dion was beset by it for years, and Perth scientist Stephanie Moore spent months in hospital after it robbed her of the ability to speak or walk in 2022.
Stephanie Moore was diagnosed with stiff person syndrome in 2022, the same year as Celine Dion’s diagnosis. A Current Affair
“When I was discharged, I didn’t have my laugh, I couldn’t smile, I was slurring, I used to sit in the hospital listening to my voice message praying I could speak like that again,” she told A Current Affair.
Stiff person syndrome is a progressive neurological disorder that causes severe muscle stiffness, rigidity, and painful spasms.
Patients are all affected differently, Moore said.
“Everyone’s affected, like I say, differently. Now, in my case it’s almost like I’ve had a stroke on my left-hand side,” she said.
Far from letting her condition stop her life in its tracks, she is on a mission to raise awareness.
She founded a support group for sufferers of the condition, and is now planning to take part in the Bunbury Women’s Triathlon.
She admits the training — swimming 10 laps three times a week — has been difficult.
“It’s been quite a struggle at the start, when I started physio, hydrotherapy, I couldn’t swim,” she said.
Stephanie has had to teach herself to walk, talk, and swim again. A Current Affair
“We had to break it down to the very basic building blocks, and it’s only now I’ve been able to give up those swimming aids.”
Moore is sharing her story not only to inspire belief, but to fight for better treatments.
“It’s called CAR-T therapy, there are treatments at the moment in the United States, in the Mayo Clinic,” she said.
“It would be nice to have it in the southern hemisphere.”
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