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1 in 10 Tasmanians with epilepsy sustaining serious physical injuries
Call to improve community awareness, support & response to seizures this Purple Day®
One in 10 Tasmanians living with epilepsy experience a seizure-related injury each year, many of which are potentially life-threatening, according to an article just published in MJA InSight to mark Purple Day® (an international epilepsy awareness day).1
The most commonly reported seizure-related injuries sustained by those living with the neurological (brain) disease include head (one-in-four of which require stitches), water immersion (almost 26 per cent), driving(14 per cent), burns (14 per cent), fractures (10 per cent) and dental-related injuries (10 per cent).1,2
Doctors, advocacy groups, patients and their families are joining forces Australia-wide today to highlight the serious injuries caused by epileptic seizures, and call for heightened awareness, understanding and support for the 20,000 Tasmanians who will develop epilepsy at some stage in their lives,3 to create calmer waters through which they can safely navigate their physical journey with the disease.
According to MJA InSight article co-author and Consultant Neurologist and Epileptologist, Royal Prince Alfred Hospital and Sharp Neurology, Dr Kaitlyn Parratt, Sydney, experiencing even one seizure a year can pose risk of serious injury.1
"A seizure is the result of abnormal, excessive or recurring electrical activity in the brain,4 noting there is tremendous physical risk associated with experiencing seizures.
"One in three Australians living with epilepsy will sustain a seizure-related injury in their lifetime, more than 50 per cent of which will prove particularly dangerous to the head, or will occur at home in the bath or swimming pool," 2 said Dr Parratt.
"Australians living with epilepsy are at 15-to-19 times greater risk of drowning than the general population,1,5 and are also at risk of sustaining a range of other injuries, including burns, serious fractures, dislocations and car accidents.1,6
"It is therefore vital we improve community understanding of the physical dangers faced by those experiencing epileptic seizures, and educate people on how to react in the event of a seizure, to help maximise patient safety," Dr Parratt said.
The epilepsy community's call today coincides with the launch of 'Look for epilepsy' – a UCB-led community engagement initiative designed to highlight the much-needed support available to those living with epilepsy, and their carers, while raising awareness of the brain disease. The initiative urges Australians to lend their support to members of the epilepsy community by visiting lookforepilepsy.com.au, taking a selfie with a purple glasses filter on the site, and sharing the selfie on their social media channels to support epilepsy awareness, using the hashtag #lookforepilepsy.
MJA Insight article co-author and neurologist, epileptologist and epidemiologist, A/Prof Wendyl D'Souza, St Vincent's Hospital, Melbourne, who is supporting the Look for epilepsy initiative, hopes new and improved ways of predicting seizures will reduce risk factors for Australians living with epilepsy.
"Concerningly, people living with epilepsy have a mortality rate of up to three times higher than the general population.7 A frequent cause of epilepsy-related death is Sudden Unexpected Death in Epilepsy (SUDEP), where sudden death occurs in a person with the disease for no apparent reason.8
"However, according to emerging Australian research into seizure patterns, while long-considered to be unpredictable, there is, in fact, a person-specific long-term pattern to seizures in most (80 per cent) cases,"1 said A/Prof D'Souza.
"The ability to forecast when someone may be at high risk of seizures through wearable devices, for instance, may help to reduce uncertainty, and allow for the implementation of preventative strategies to minimise the risk of physical injury, and SUDEP."1
Passionate cellist and Sydney Conservatorium of Music student, Amy, 20, Sydney, who was diagnosed with epilepsy in 2017, understands the severe physical and mental toll of experiencing seizures. She predominantly experiences absence seizures, during which she blanks out, or stares into space for between two-to-10 seconds.9
During a high intensity interval gym training session one day however, Amy experienced her first and only tonic-clonic seizure (involving a loss of consciousness and alternating stiffness and jerking).9
She fell off the treadmill, and hit her head hard on the ground, and later learned that hyperventilation from over-exertion was one of her seizure triggers.
"Living with epilepsy is very challenging, both physically and mentally. The disease affects my memory and the seizures make me very tired.
"I love to run, snowboard and swim, but I'm always worried that having a seizure could cause me to fall, hit my head, or even drown," Amy said.
"If I'm crossing the road while having an absence seizure, I could literally freeze for up to 10 seconds and a car could hit me."
Fortunately, armed with the invaluable care and support from her family, neurologist, and anti-epileptic medication, Amy has been seizure-free for the past 14 months. She is not however, free from the strong, relentless shackles of uncertainty involving recurrent seizures.
"My friends see that I'm seizure free, and think my epilepsy has gone, and I'm fine now. What they often don't realise however, is just how much of my life epilepsy continues to consume.
"This Purple Day®, I'm calling for people to recognise the seriousness of epilepsy, the dangers of seizures, and the daily physical and mental challenges faced by people like me," said Amy.
Epilepsy Tasmania CEO, Wendy Groot, Hobart, hopes improving awareness of epilepsy will serve to address the abundant myths and misconceptions surrounding the disease.
"There are many common myths and misconceptions involving epilepsy. Epilepsy is something everyone has heard of, but that's usually the extent of their knowledge. Some people think it's a mental health issue, but it's certainly not. It's very physical.
"That's why the Look for epilepsy initiative is so important, because it allows our community to raise awareness of epilepsy, and reinforce the much needed support available to those in need," Ms Groot said.
Today (March 26) is Purple Day®, a global initiative that aims to heighten community awareness of epilepsy. Through the joint efforts of Epilepsy Action Australia, Epilepsy Australia, Epilepsy Tasmania, Epilepsy Queensland, Epilepsy ACT, the Epilepsy Foundation, The Epilepsy Centre (SA and NT) and Epilepsy WA, more than 100 landmarks Australia-wide will turn purple this evening, to honour this important occasion, and applaud those living with epilepsy locally, and around the world. The Tasmanian illuminations will include Launceston Town Hall; Uniting Church in Ross and Oatlands; Domain House, ABC Building, Railway Roundabout, Scots Memorial Church, Elizabeth Mall, Franklin Square in Hobart; Kennedy Lane in Battery Point; Centenary Building, University of Tasmania in Sandy Bay; West Coast Heritage Centre in Zeehan, and Bass Highway, Latrobe.
Given the current COVID-19 situation, Epilepsy Tasmania encourages the community to celebrate Purple Day, and Purple Month by engaging in the following 'virtual' activities, either at home with immediate family members, or at work, using strict social distancing and indoor room spacing:
· Use your social media channels to raise awareness of epilepsy, including participating in the Look for Epilepsy initiative at lookforepilepsy.com.au;
· Join Epilepsy Tasmania's LIVE Facebook event at 12pm today (Thursday, March 26);
· Enter Epilepsy Tasmania's online competitions to WIN;
· Buy Epilepsy Tasmania merchandise online and we'll post it to you;
· Encourage your kids to join our 'Finger Knitting Challenge' at home; and
· Listen to our new 'My Journey' audio podcast series.
For counselling, support and information, head to Epilepsy Tasmania at www.epilepsytasmania.org.au or call 03 6344 6881.
About epilepsy
Epilepsy is a common brain disease involving recurrent seizures10 caused by a temporary disruption of electrical activity in the brain.3 Epilepsy is not just one condition,10 there are many different types, characterised by recurrent seizures,11 noting not all seizures are epileptic.10
Epilepsy can develop at any age, regardless of gender or ethnicity.10 However, epilepsy is more likely to be diagnosed in childhood or senior years, noting children represent approximately 40 per cent of the epilepsy population. Epilepsy affects an estimated 50 million people world-wide,7 with an estimated three-to-four per cent of Australians will develop epilepsy in their lifetime.10
The total annual cost of epilepsy in Tasmania is approximately $257 million.12 This includes substantial health system costs, costs associated with loss of productivity, the cost of informal care and equipment and transport costs.12
Purple Day is a Registered Trademark of The Anita Kaufmann Foundation.
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