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March 2021 Talking Point

“No, my bruises are not from a fight.”

A young barista named Gerard from Flick The Bean café in Launceston recently shared that turning up to work with bruises or a black eye results in customers joking that he must have been in a fight. The sad reality is that seizures make his life unimaginably challenging and sometimes even dangerous and he has the broken teeth, bruises and scars to prove it.

The colour purple is associated globally with epilepsy, and for many it evokes a sense of calm, luxury and perhaps a little intrigue. However, after 5 years as CEO of Epilepsy Tasmania I have come to understand that my favourite colour can represent something entirely different to people who live with epilepsy.

30 per cent of the 20,000 Tasmanians diagnosed with epilepsy are unable to control their seizures through medication. For these people, purple is often worn unintentionally in the form of bruises, burns and broken bones caused by a sudden seizure that results in them falling into something, hitting the ground face first, scalding with a hot drink, grasping at a scorching surface, or worse.

Flick The Bean cafes are doing the right thing and completing Epilepsy Smart workplace training to ensure their staff know how to recognise and help people who are having a seizure. This will benefit everyone who enters the café and ripples beyond as staff take their knowledge and understanding wherever they go.

And it could be you or I who needs their help, as one in ten of us will experience an unexpected seizure at some time in our life. However, an epilepsy diagnosis will only be given after multiple seizures occur that are not caused by another condition, for example, a very high fever.

Caused when the brain’s neurons misfire, a seizure can manifest in over 40 different ways depending on where in the brain it starts, how far it travels and how long it lasts. Everyone experiences a seizure slightly differently and it can even be different each time. Some people will space out for a while, others will continue what they were doing but with no awareness for their safety, some will fall to the ground and lose muscle control, and so on.

Medication successfully prevents or reduces seizure frequency for about 70 per cent of people with epilepsy and they often go back to living a life similar to the one they were used to. But the remaining 6,000 Tasmanians who are unable to be helped by medication often have their lives altered dramatically.

Random seizures can result in loss of income and driving license. They create anxiety around leaving the house; unfair treatment; difficulty with concentration, learning and memory; depression; increased likelihood of sudden death; and of course, the physical injuries caused by seizures.

Epilepsy is the second most burdensome neurological condition after dementia and Tasmania has the highest prevalence of epilepsy than any other state or territory in Australia. This figure is expected to further rise due to our older than average population, rising life expectancy and an increasing proportion of people surviving incidents that lead to epilepsy.

Despite the obvious link between bruising and purple, the colour is used to represent epilepsy as it was chosen by a child in Canada who was on a personal mission to raise awareness of the condition.

Purple has endured as epilepsy’s colour of choice and I see it as healing, representative of diversity, a way to show empathy for people who live with epilepsy, and a symbol of hope that more research will find a cure for a condition that affects so many.

Here in Australia, March is Epilepsy Awareness Month and it’s a time when we ask Tasmanians to do two things:

  1. Use the colour purple to show your empathy and support for people with epilepsy.
  2. Ask the people you know if they have ever had a seizure or if they know someone who has epilepsy. Listen and discuss what you know about the condition, and what you don’t.

That’s it! These simple things matter because they are like a stone in a pond whose ripples are the beginning of understanding and compassion.

For ideas on how to use purple this March, Epilepsy Tasmania has created a range of free Just Go Purple resources available to download on its website.

While there, update your knowledge of epilepsy or better still, book your workplace, school or community group in for some epilepsy-specific training and become an Epilepsy Smart location.

As Tasmania’s voice for epilepsy, Epilepsy Tasmania will this month host a range of activities we invite you to attend, including an exhibition of art and podcasts where locals voice their own experiences with epilepsy.

For a full list of events and activities happening during March, visit our website epilepsytasmania.org.au/purple-month

Wendy Groot

CEO Epilepsy Tasmania