Opinion: This invisible disease can be beaten if we look hard

This post was originally published as an opinion piece in The Herald Sun on Wednesday 27 May 2015, World MS Day.

 

This may surprise you but despite living with multiple sclerosis, I feel lucky. Melbourne is one of the best cities to live in if you have MS.

The medical research institutes are world class. There are world-first medical trials, which I have participated in. And the hospital system does its best to cater to what is an extraordinarily difficult disease to manage.

Today is World MS Day, when the global MS community comes together to share stories, raise awareness and campaign with and for everyone affected by the disease.

But many people are still unclear on what MS is. It is a chronic, progressive and potentially debilitating neurological autoimmune disease for which there is no known cause and no known cure.

I am the prime demographic for the disease: I am female, between 20 and 40, of Caucasian descent and I once had glandular fever. When you think about it, those risk factors include hundreds of thousands Australians. MS strikes where you least expect it: it is not inherited, nor is it contagious.

MS is called an invisible disease, because a sufferer can look perfectly fine, even healthy, while being in acute neurological, physical and emotional distress. To picture MS, think of a frayed and broken copper wire and pretend the copper wire is a central nervous system short-circuiting. The right signals simply do not get through, resulting in symptoms that make you think you are going mad. Numbness, loss of vision, disorientation, muscle weakness, spasticity, insomnia, depression, fatigue. You name a symptom, MS may cause it.

But why should you care? Here’s why: Victoria has the highest rate of MS in Australia. There are about 2.5 million people living with MS in the world, with about 23,000 of those in Australia. But MS has a geographical gradient. The further away from the equator, the more likely you are to get MS. That means there are more cases of MS in Victoria than elsewhere in Australia.

You should care because it’s likely know someone with an invisible disease and, quite possibly, you don’t even know it.  There is a stigma to being different and there is a stigma to living with a sometimes disabling disease that no one else can see. Many people with MS and other invisible diseases are not open, like I am, about their disease.

It is frightening. And it can be a challenge to convince people — friends, family and employers — to take your disease seriously when you don’t look sick.

And you should care because MS, and other chronic diseases, are expensive.  There are more than 10 MS drugs available on the PBS but before you say “let’s take them off”, consider that those medications are the cheaper option: they aim to halt the disease’s progression, which helps to avoid the more expensive costs of advanced cases of MS.

Also, more people are being diagnosed with MS, although it is not yet clear whether that is because diagnostic tools are getting better or the incidence of MS is increasing.

So what can we do? MS therapies are advancing rapidly, in part due to medical advances made in Victoria.

So let’s help our state secure the opportunities that the Medical Research Future Fund presents and bring them to Melbourne. In the 2015 Budget, the Federal Government announced that the Medical Research Future Fund will receive $400 million over four years, starting with $20 million in 2015-16 and increasing to $500 million in 2019-2020.

While the original intention was to grow the fund to become the world’s biggest at $20 billion by 2019-2020, that is now expected to occur in 2022-23.

But not only does medical research save lives (in Melbourne and around the world), it creates jobs throughout the healthcare and hospital system and generates world-class technical and manufactured exports. It is a win for patients and for all Victorians.

There are plenty of diseases and special days, after all. All are worthy. But World MS Day is particularly Victorian.

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