Submitted by Linda McGlone
250,000 Shades of Purple:
Epilepsy does not look the same for everyone
Purple Day for Epilepsy Awareness – March 26, 2020
- For the first time, the Sydney Opera House will light up purple for Epilepsy Action
- $250,000 Purple Day fundraising goal to go towards life-changing technology, $1 for every person diagnosed with epilepsy in Australia.
This March, Epilepsy Action Australia, the largest provider of services for people living with epilepsy in Australia, is advocating for greater recognition for epilepsy as a spectrum disorder, meaning that the 250,000 Australians living with epilepsy experience the condition differently. While epilepsy is more common than Parkinson’s, cerebral palsy and muscular dystrophy combined, it is widely misunderstood.
“Epilepsy occurs on a spectrum, like autism. In some cases it is genetic, but epilepsy can also be acquired by things such as head injury, infection or stroke, and it can occur at any point in a person’s life, from infancy to old age, many people do not know why they have epilepsy” says Carol Ireland, CEO of Epilepsy Action Australia.
“Epilepsy also varies in severity and frequency from person to person and seizures differ as well, from a momentary pause and staring into space to full body convulsions. In fact, there are actually about 40 different types of epilepsy which can either involve the whole brain or part of the brain.”
Neurologist Professor Terry O’Brien, President of the Epilepsy Society of Australia and Director of Neurology at Melbourne’s Alfred Hospital, says that the growing recognition of epilepsy’s complexity means that there is not one way to treat or manage the condition and different forms of epilepsy require an array of personalised therapeutic approaches.
“Approximately 70% of all patients can have their seizures controlled with anti-epileptic medication. For those who don’t respond to drugs, advanced imaging techniques may allow them to benefit from surgery,” says Professor O’Brien. “Yet epilepsy still has no cure — for many, it is a lifelong, chronic disorder.”
Purple Day on March 26 is a global initiative dedicated to raising epilepsy awareness. Every year Epilepsy Action Australia works to bring the condition out of the shadows and increase awareness of the impact that this condition can have on individuals and families.
“Throughout history, epilepsy has been a misunderstood condition and misperceptions, fears and stigma still exist within parts of our community today. That is why we are using the symbolism of 250,000 shades of purple this Purple Day to highlight that living with epilepsy. is different for each of the 250,000 Australians diagnosed with the condition,” continued Ms Ireland. “Incredibly, in recognition of this global initiative, for the first time ever, the Sydney Opera House will light up purple for Epilepsy Action Australia on the evening of Purple Day on March 26.”
$250,000 Purple Day fundraising goal for life-changing technology.
This Purple Day, Epilepsy Action Australia are aiming to raise $250K – one dollar for every person diagnosed with epilepsy in Australia – to go towards creating a range of cutting edge technology solutions and e-Resources.
“What we hear every day from people with epilepsy, is a real desire to maintain as much control as possible whilst living with what can be a very out of control condition. Technology can be a real life-changer in this regard, for better communication, improved care and, ultimately, better quality of life,” continued Ms Ireland. “For this reason, Epilepsy Action is committed to being at the forefront of cutting-edge solutions for managing epilepsy and putting the power at the fingertips of those living with the condition We are in the advanced stages of exploring a range of apps to assist with seizure management, telehealth and better clinical consultations with GPs and specialists.”
“What we desperately need is funds to go towards getting incredible resources off the ground and working to improve the lives of those living with epilepsy. We encourage the Australian public to get behind us in any way possible this Purple Day on March 26 to reach our $250,000 goal. That’s $1 for every Australian diagnosed with epilepsy,” finished Ms Ireland.
Get Involved in Purple Day this March
Epilepsy Action would like to encourage all Australians to get involved in Purple Day this year to raise funds and awareness, with some ideas including:
- Host your own fundraising event with a purple twist – a morning tea, a BBQ, a bake sale, a run, whatever you can think of! The only limit is your imagination.
- Get your school involved – hold a free dress day, sports day, sausage sizzle, or deliver Epilepsy Awareness presentations for K-2 or 3-6 in class.
- Buy our merchandise to show support and start conversations including t-shirts, hats, keyrings, pens and wristbands
- Make a donation online or phone 1300 37 45 37, to help support what we do.
– ENDS –