March 27, 2023Yesterday, 26 March was Purple Day – a global initiative dedicated to raising epilepsy awareness and shining a light on people living with epilepsy.
Purple Day was founded in 2008 by nine-year-old Cassidy Megan of Nova Scotia, Canada. Her own struggle with epilepsy was her primary motivation to get people talking openly about the condition. Cassidy named the day ‘Purple Day’ after the internationally recognised colour for epilepsy, lavender.
The 2023 Purple Day campaign theme is “dare to be different”, and on this day, people are encouraged to wear purple to raise awareness for people living with epilepsy. The campaign aims to break down the barriers that may still exist in society for those living with epilepsy and dispel the myths surrounding the condition.
“At Northern Health, one in five patients present as a person living with a disability. Some of these patients live with epilepsy. A person who has epilepsy tends to have spontaneous, recurrent seizures. Approximately one per cent of Australians are currently living with epilepsy and over 12,000 people a year are diagnosed with epilepsy,” said Northern Health Disability Liaison Officer, Maria Bowman.
Rachel Powell is a young woman who has been living with epilepsy since she was a child. She’s been a volunteer with Northern Health since 2010 and she shares with us her inspiring story.
“I was only 11-years-old when I was diagnosed with epilepsy. Following the first seizure, which happened at school, I was taken to hospital. The doctors ran some tests and scans and then told my mum I had epilepsy. It was scary for both of us because we didn’t know much about it then,” Rachel said.
Despite the diagnosis and spontaneous seizures Rachel experiences, she embraces life through volunteering. Today, her condition is well controlled with medication, and she loves being able to help others.
Rachel encourages everyone to use Purple Day as an annual opportunity to learn more about epilepsy and debunk many common myths about the condition.
“Don’t be scared. It can be daunting at first, but educate yourself on epilepsy and get all the support you need. You can live a normal life and participate in society, despite the condition,” she said.
Northern Health Head of Neurology, A/Prof Doug Crompton, says that this an exciting time for epilepsy diagnosis and care at Northern Health, with the new video EEG monitoring facilities on Ward 21, expected to come online in mid-2023.
“Welcoming people to Ward 21 for several days and nights of EEG (brainwave) monitoring can be vital to clarify difficult diagnoses, as many other events can mimic epileptic seizures. There are very many different kinds of epilepsy, and our EEG monitoring will help to refine important details which help optimise medication choice and clarify which people could benefit from epilepsy surgery,” he said.
The epilepsy team at Northern Health continues to grow and it currently includes four neurologists specialising in epilepsy and two EEG (brainwave) scientists.
“Many exciting developments are underway in epilepsy care, including the increasing recognition that seizures tend to recur in cycles. An app and a smartwatch together can predict times of high and low seizure risk. This can help to give people with epilepsy greater confidence to plan their lives and removes some of the uncertainty about seizure timing,” said Dr Crompton.
For more information and resources on epilepsy, please visit: www.epilepsy.org.au.
Pictured: Rachel Powell.
