Polio survivors living with disease's lasting effects fear some might not even know due to past stigma, secrecy - ABC News
Twenty-one years since Australia was declared polio free, some survivors are living with the disease's long-lasting effects, and fear a number might not even know.
In 1950, when Gillian Thomas contracted the highly contagious disease at just 10 months old, vaccines had not yet been introduced to protect Australians.
Ms Thomas has spent her lifetime disabled by polio, and now in her 70s, the long-term effects are getting worse.
"I don't walk these days, I use a wheelchair, mostly because my balance has gone now and it's difficult to be safe," Ms Thomas said.
"I certainly don't want to fall over and break something because my bones aren't terribly strong."
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Ms Thomas, president of Polio Australia, says it's important to remember that polio survivors are still here and that some people, particularly those with non-paralytic polio, might be suffering "late effects" of the disease and not even realise it.
She says they might not have been told they had polio when they were children if their parents kept it a secret.
"There was a lot of stigma attached to contracting polio," she said.
"They may recall having had a childhood illness but didn't know much about it."
Millions of Australians infected
Australia had two major polio epidemics in the 1930s and the 50s before a national vaccine roll-out gained the nation herd immunity.
It's estimated that 2–4 million Australians were infected with the virus and 40,000 people developed paralytic polio.
"A lot of facilities and schools were closed just trying to contain it, but part of the problem was they didn't really appreciate how it was spread back in those days," Ms Thomas said.
"Polio is brought on by the faecal oral route, which doesn't sound very nice, but basically it comes down to people going to the toilet and not washing their hands properly afterwards.
"So, you can easily contract it that way, especially with kids. It's a sanitation issue."
'Invisible' symptoms
While Ms Thomas contracted paralytic polio, many people didn't display any symptoms.
"One per cent of those that get infected with polio develop some kind of paralysis," said Michael Jackson, a clinical health educator with Polio Australia.
"Six per cent have signs of mild weakness or flu symptoms and then the vast majority don't have any clear symptoms that it's polio."
But "hidden" symptoms can emerge many years later in the form of post-polio syndrome.
"We know that those people who were exposed to polio, particularly those with some kind of symptom, a stiff neck or flu, that group and those that had paralysis, are at the highest risk of developing post-polio syndrome," Mr Jackson said.
"Hearing what the person says about their history of polio is more important than seeing paralysis in the person," Mr Jackson said.
"You can't see the pain."
How to identify polio's late effects
"Invisible" post-polio symptoms can occur 30 years or more after contracting the acute form of the disease.
"The majority of people in Australia who have post-polio [syndrome], they had polio in Australia aged less than six, which means the symptoms are slowly on-setting and this is where things get complicated," Mr Jackson said.
Mr Jackson said the symptoms could vary greatly.
"It's very individualised, which makes it challenging to treat as a clinician but it's also challenging to manage as a patient."
Therefore getting a diagnosis of post-polio syndrome is tricky.
"There are at least 114 other neuromuscular conditions [with similar symptoms], but your GP should have enough knowledge of your history to determine [your condition]," Mr Jackson said.
Healing, hydrotherapy and getting help
When she was 12, Ms Thomas had a spinal infusion and spent a year in Melbourne recovering. Hydrotherapy helped to relieve the pain — and still does, all these decades later.
"People love to do hydrotherapy, and I love getting into water to relax," Ms Thomas said.
"My baths are legendary amongst my friends."
However, she says exercise has to be individually tailored to people's needs.
"Basically [that's] so you work the muscles that are capable of working, and not those muscles that are overworn already," she said.
Ms Thomas encourages people to reach out for help if they are — or suspect they might be — a polio survivor.
"We are now having more difficulties with the late effects of polio, which is why Polio Australia exists," she said.
"We also have an Australian polio register so we can keep in contact them [survivors], providing information and support."
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