Slipping on a pair of high heels is a powerful act of rebellion for Lauren Butterly.
She was 25 when she lost all feeling in her right arm. As she sat in a hospital emergency department, a procession of doctors delivered blow after awful blow.
Ms Butterly was diagnosed with multiple sclerosis (MS). The first neurologist told her to forget about her legal career. She would need to give up her prestigious position at one of Australia’s top-tier firms at the University of NSW.
The second told her she would never wear high heels again.
“I think about that neurologist whenever I put on my heels,” Ms Butterly, 33, recalls as she sits in her office at one of Australia's leading law schools.
The lawyer academic at the University of NSW has a career that far exceeds the ambitions of her younger self.
“I have a job that lets me travel the world," she said.
The devastating trajectory of MS patients has shifted dramatically from grinding debilitation to dogged defiance over the past decade, a major new report shows.
People with MS are increasingly able to keep working and control their symptoms with less formal care and support thanks to concerted research and new generation treatments, according to the Health Economic Impact of Multiple Sclerosis in Australia 2017 report due to be released at Parliament House in Canberra on Wednesday.
An estimated 25,600 Australians were living with MS in 2017. The 20 per cent increase in prevalence since 2010 is largely due to patients living longer, according to the report commissioned by MS Research Australia and compiled by the Menzies Institute for Medical Research.
MS is commonly diagnosed when people are in the prime of life. The average age of onset is about 34 years.
Women account for the vast majority (78 per cent) of those diagnosed with the auto-immune disease in which the immune system gnaws away at the protective myelin sheath that covers nerve fibres.
It damages the body’s motor and sensory functions causing a loss of movement and feeling, as well as fatigue, pain and sometimes cognitive impairment.
Ms Butterly recalls losing the ability to use her right arm; particularly problematic for the right-handed lawyer. Relapses would affect her balance and ability to walk confidently.
About 85 per cent of patients have relapsing-remitting MS. Ten per cent to 15 per cent develop the progressive form of the condition, becoming increasingly debilitated over time.
Ms Butterly has witnessed a dramatic shift in treatment over the course of her own MS since she was diagnosed in 2011 and referred to neurologist Professor Michael Barnett at the Brain and Mind Centre, at the University of Sydney.
A first line drug proved ineffective and left her feeling hungover. Eight months after she was diagnosed Professor Barnett switched her to a new generation, disease-modifying treatment fully covered on the Pharmaceutical Benefits Scheme.
She has not relapsed since, and her symptoms are "very manageable", she said.
The total economic burden of MS in Australia was $1.75 billion in 2017 - up $510 million (41 per cent) since 2010 - due to the rising numbers of patients and the cost of new treatments.
The annual cost per person rose by 276 per cent, reaching averages of $30,561 for people with no disability and $114,813 for people with severe disability.
But the average yearly cost to individual patients (both direct and indirect) rose by less than $10,000 over the same period (from $58,652 to $68,382) because people with MS are less likely to leave work and relied less on support services.
Lost wages accounted for 32 per cent of the economic burden of the condition, compared to almost 50 per cent in 2010, according to the report.
"Because of the medication I'm on, I'm able to work and earn a good salary, pay my taxes and university debt and contribute to society in broader ways," Ms Butterly said.
Menzies Institute Professor Andrew Palmer said new treatments had a “profound effect”, but “we can’t take our foot off the pedal”.
“We need to maintain the momentum and continue to make improvements in the management and care of MS, including interventions aimed at stopping the relapses and preventing the progression of MS, so we can reduce the human and economic burden further,” he said.