The first time Casey Garland experienced symptoms of her incurable condition she overlooked them.
The second time, they were unavoidable.
The Melbourne woman woke up on the day after the AFL Grand Final to discover she could not stand or walk.
“I was fine one day and I wasn’t the next,” she said.
Use of her legs slowly came back, but she was left with a list of other symptoms that were eventually diagnosed as multiple sclerosis (MS) when she was 33 years old.
MS – a degenerative disease that progressively damages nerves, making it increasingly difficult for the brain and the body to communicate – is considered rare.
But a report released today by MS Australia shows the number of Australians living with it is growing, and the rate of that rise is increasing.
According to the report, the number of people living with the condition in the four years to 2021 increased by 7728, taking the total to 33,335.
That’s an increase of 30 per cent, which is significantly higher than during the previous reporting period.
In the previous eight years, the researchers noted an increase of 4324 people living with MS – a rise of 20 per cent.
What’s driving the higher rates?
Neurologist Professor Bruce Taylor, who worked on the report, said improved therapies that allow patients with the incurable disease to live longer were contributing to the growing number of people with the condition.
“As people get older, you accumulate more people,” Prof. Taylor said.
But better treatments were not able to account for such a steep rise in diagnosis.
Instead, he pointed to lifestyle factors.
He said rising rates of obesity, particularly among young people, were part of the problem.
“We all know that there has been a significant increase in the amount of obesity in Australian people,” he said.
Dr Laura Piccio, from the University of Sydney, is researching the link between diet and MS and said being overweight as a child, adolescent or young adult increased the risk of developing MS later in life.
She said research was still needed to work out the exact mechanism that led some overweight people to develop MS, but that it was already established fat tissue had a role to play in inflammatory and autoimmune conditions like MS.
“It’s not just fat storage, but it’s actually an organ that can … modulate immune and inflammatory responses,” she said.
Two other lifestyle factors that could be contributing to rising cases of MS are pregnancy rates and sun exposure.
Three out of four Australians diagnosed with MS are women.
Prof. Taylor said pregnancy had a protective effect against MS and that changing attitudes to having kids could be driving MS rates higher.
“Women are now having their children later in life and they’re having fewer of them, therefore they lose the protective effect of being pregnant,” he said.
People who grew up in sunny climates had a much lower risk of developing multiple sclerosis – in Australia rates of MS are higher in Tasmania where shorter days in winter meant less UV exposure.
Prof. Taylor also said sun exposure, particularly in adolescence and young adulthood, was linked to lower risk of a range of inflammatory diseases.
People avoiding the sun or reducing their sun exposure could be adding to the risk of developing MS.
‘An expensive disease to have’
When Ms Garland was diagnosed, she thought she would need to put her career ambitions on the back burner.
The form of MS that Casey Garland has comes as attacks that are followed by periods of recovery.
Now 36, she hasn’t had a relapse since 2020, but still experiences daily symptoms including heat intolerance, headaches, extreme fatigue, pain, muscle weakness, short-term memory loss, vertigo and numbness.
“This is my version of MS,” she said.
“And I’ve learnt over the last couple of years how to … integrate it into my life.”
Health economist Professor Andrew Palmer said MS was commonly acquired around the age of 30, which is just when patients were establishing their careers and having children.
“This can have a big impact on the development of their careers as disability increases,” he said.
That lost productivity comes at a cost and adds to the overall burden of MS.
The report from the Menzies Institute of Medical Research found that in Australia the costs of MS had increased from $1.75 billion in 2017 to $2.45 billion in 2021.
That included everything from direct costs such as medications and doctors’ consultations, to indirect costs such as lost productivity.
Ms Garland’s career is now back on track, but the disease still costs her.
Government benefits cover much of the cost of the medication she takes to slow the progression of the disease.
On top of those she takes drugs to manage fatigue and sleep issues, which she pays for.
She also picks up the bill for remedial massage and personal training.
“It’s an expensive disease to have,” she said.
Early diagnosis can lead to slower progression of the disease and better long-term outcomes, but reducing the risk of acquiring the incurable disease would be even better.
Prof. Taylor said to do that people should avoid smoking, get careful sun exposure, and avoid obesity.
“If we could actually prevent MS rather than treat it, we would be able to reduce that burden and we’d also be able to prevent a lot of unnecessary suffering and ill health,” he said.
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