Prevalence in Australia
- The number of people currently living with epilepsy in Australia is close to 250,000.*
- Anyone can be affected by seizures at any age, but epilepsy is most frequently diagnosed in early childhood, adolescence and people over 65 years of age.1
- Epilepsy is the most common serious brain disorder worldwide and affects people of all ages.2
- Up to 3–3.5% of Australians will experience epilepsy at some point in their lives.*3
- Epilepsy can have significant social, physical and psychological consequences.4
Seizures and diagnosis of epilepsy
- Epilepsy is diagnosed if someone has:
- at least two unprovoked (or reflex) seizures occurring less than 24 hours apart
- one unprovoked (or reflex) seizure and a probability of further seizures happening.5
- You should never restrain someone having a seizure or force something into their mouth. Gently roll them on their side, support their head, protect them from injury and make sure their breathing is okay. For more details click here.
- It is commonly thought that epilepsy always involves convulsions. In fact there are around 40 different types of epilepsy and epilepsy syndromes.
- Seizures can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. They can also vary in frequency, from less than one per year to several per day.2
- People with epilepsy can obtain a driver’s licence if their seizures are controlled by medication or if they fulfil the guidelines set out by the driving authorities.
- Many people outgrow or have a long-term remission from seizures. Epilepsy is not necessarily a lifelong disorder.
Treatment
- With treatment, an estimated 60-70% of people with epilepsy can be seizure-free, yet about three out of four people in developing countries do not get the treatment they need.1,2
- After two to five years of successful treatment and being seizure-free, medications can be withdrawn in about 70% of children and 60% of adults without subsequent relapse.2
- A small percentage of people with epilepsy may be eligible for surgery. More than half the number of people who have surgery remain seizure-free long term.6 Many others experience a reduction in seizures or severity of their seizures.
Risk of death
- Epilepsy is associated with an increased risk of death, up to 2–3 times the general population, which may be related to:
- an underlying brain disease, such as a tumour or infection.
- accidents or seizures in dangerous circumstancesleading to drowning, burns or head injury
- prolonged or ongoing seizures (status epilepticus)
- sudden and unexplained causes – SUDEP (Sudden Unexpected Death in Epilepsy)
- a possible respiratory or cardio-respiratory arrest during a seizure.
- treatment related death
- suicide.7
*Figures are based on Australian population in Feb 2017 of 24.6 million.
References
- Brodie, M.J., Schachter, S.C, Kwan, P. 2005. Fast Facts: Epilepsy 3rd Ed. Health Press, pg 9-12.
- World Health Organisation, http://www.who.int/mental_health/neurology/epilepsy/en/ http://www.who.int/mediacentre/factsheets/fs999/en/
- Based upon a combination of WHO figures and Population figures obtained from ABS (3101.0)
- POONAM NINA BANERJEE AND W. ALLEN HAUSERILAE, 2007. ILAE Book Incidence and Prevalence Ch 5. http://www.ilae.org/booksales/data/pages/Comprehensive%20Textbook%20chapter1.pdf
- ILAE Definition of epilepsy 2014 http://www.ilae.org/Visitors/Centre/Definition-2014.cfm
- de Tisi, j., Bell, G.S., Peacock, J.L., McEvoy, A.W., Harkness, W.F.J., Sander, J.W., Duncan, J.S. 2011. The long-term outcome of adult epilepsy surgery, patterns of seizure remission, and relapse: a cohort study. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60890-8/abstract
- Selim R. Benbadis. 2005. Psychogenic Non-Epileptic Seizures. Wyllie, 4th Ed. Ch 42, Section D. http://hsc.usf.edu/com/epilepsy/Wyllie%204th%20Ed%20PNES.pdf
- Boera, H.M., Mulac, M., Sandera, J.W. 2008. The Global Burden and Stigma of Epilepsy. Epilepsy & Behavior
- Volume 12, Issue 4, Pg 540–546 http://www.sciencedirect.com/science/article/pii/S1525505007004878
- Sudden Unexpected Death in Epilepsy http://emedicine.medscape.com/article/1187111-overview
We are always happy to work with journalists and media outlets interested in helping us create greater awareness of epilepsy, and publicise one of our many national awareness or fundraising events.
Our key spokesperson is:
Carol Ireland – Chief Executive Officer
1300 37 45 37
Carol can provide authoritative commentary on a wide range of issues relating to epilepsy including the latest research into medicinal cannabis, the psychological and social impact of the condition and SUDEP (Sudden Unexpected Death in Epilepsy).
In addition, we can also:
- Answer general media enquiries
- Coordinate media opportunities with our Ambassadors
- Put you in touch with parents of children with epilepsy or adults who are willing to share their personal stories.
Epilepsy Action Australia welcomes the support of media professionals in helping us inform and educate the wider community about epilepsy and its impact on the over 250,000 Australians living with the condition. We are also happy to provide information about the services we provide and how they help to improve the lives of the many children, teenagers, adults, and their carers who are affected by epilepsy.
In many ways, epilepsy is a ‘forgotten’ disease! Even though it is more common than Parkinson’s disease, multiple sclerosis and cerebral palsy, it is considered ‘rare’, and ignorance and fear about epilepsy and seizures remains widespread. The stigma surrounding the condition often compels people to hide their condition, and can lead to low self-esteem, depression and suicide.
Common misconceptions include that it is a mental illness that affects intelligence and can lead to disability. Epilepsy is a neurological conditionthat disrupts the normal electrical and chemical activity in the brain. Given the right support and community understanding, people with epilepsy should have the same opportunities as everyone else. Unfortunately, due to public stigma, many people with epilepsy are unfairly judged and discriminated against when it comes to employment, sporting activities, and other opportunities.
Media communications can improve public awareness by disseminating factual, up-to-date information that over time will help to dispel the widespread stigma and myths.
ANNOUNCEMENT OF MEDICAL ADVISOR TO EPILEPSY ACTION AUSTRALIA
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‘Make March Purple’ to turn things around for epilepsy
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PRESS RELEASE: New Leadership for the Board of Epilepsy Action Australia
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PRESS RELEASE: New Board of Directors Appointments
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PRESS RELEASE: New study reveals gaps in Australians’ understanding of epilepsy
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PRESS RELEASE: Sydney Opera House lights up purple to raise awareness for Epilepsy Action Australia
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PRESS RELEASE: From Outrage to relief, as TikTok releases new feature to avoid seizure triggers
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PRESS RELEASE: The Million Dollar Teddy Bear
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PRESS RELEASE: Selfcare September
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PRESS RELEASE: Outrage over sick TikTok stunt
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PRESS RELEASE: Purple Day 2019
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PRESS RELEASE: Epilepsy Nurse Line
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PRESS RELEASE: Forgotten condition remembered
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PRESS RELEASE: Sudden Unexpected Death in Epilepsy (SUDEP)
Heartbroken families applaud launch of new clinical tool to prevent premature epilepsy deaths Sudden Unexpected Death in Epilepsy (SUDEP) Action Day, October 23 8 years ago, Anny Marrett received a phone call that no parent should have to experience. “When Roy and I got a call on Monday morning that George had not turned upRead More…
PRESS RELEASE: Cannabis4Epilepsy
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PRESS RELEASE: Purple Day 2020
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PRESS RELEASE: Purple Wiggle Ambassador
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The new campaign to reach thousands of Australians with drug resistant epilepsy that fall through the treatment gap
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Empowering Hope: UCB Australia’s Commitment to Childhood Epilepsy Research
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Epilepsy Youth Conference comes to the Hunter for the first time
Media Title: Newcastle Permanent Media Type: Online Publish Date: 12 September 2023 Headline: Epilepsy Youth Conference comes to the Hunter for the first time Abstract: 30 young people living with epilepsy travelled to Newcastle this weekend, 9-10 September, to take part in Epilepsy Action Australia’s (EAA) Youth Conference, made possible by a grant from NewcastleRead More…
My Seven-Year-Old Daughter Has Epilepsy, So I’m Trying To Sell A Fancy Version Of Her Teddy Bear For A Million Dollars To Fund Research
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Home wanted for #milliondollarteddybear
Media Title: SMH Media Type: Online Publish Date: 22 November 2020 Journalist: Peter FitzSimons Headline: Home wanted for #milliondollarteddybear Abstract: Peter FitzSimons lost his brother Martin to epilepsy when he was just eight years old. All these years on, despite great strides having being made to limit its lethality, much research remains to be done. Link: https://www.smh.com.au/national/nsw/time-to-act-premier-our-koalas-and-farmers-deserve-better-20201120-p56gjq.html
The Age photos of the week, November 29, 2020
Media Title: The Age Media Type: Online Publish Date: 29 November 2020 Headline: The Age photos of the week, November 29, 2020 Abstract: Lila Wadelton, 7, was diagnosed with epilepsy last year. Her father, advertising writer Alex Wadelton, came up with Million Dollar Teddy Bear: he is calling on a philanthropist to buy a designerRead More…
Epilepsy charity hoping million-dollar teddy will turn fortunes around
Media Title: The Age Media Type: Online and Print Publish Date: 27 November 2020 Journalist: Carolyn Webber Headline: Epilepsy charity hoping million-dollar teddy will turn fortunes around Abstract: It may be a rather outrageous price for a plush toy, and it may be a bit of a lark but should someone stump up a cool “mill”Read More…
Catching subtle seizures can prevent car accidents
Media Title: Medical Republic Media Type: Online Publish Date: 26 October 2020 Headline: Catching subtle seizures can prevent car accidents Abstract: Carol Ireland, the CEO of patient education group Epilepsy Action, said there were car accidents in Australia tied to undiagnosed epilepsy from time to time, but that many patients with epilepsy could drive safely.Read More…
Coronavirus in Ballarat: Doctors’ call to take better care of health
Media Title: The Courier Media Type: Online Publish Date: 8 August 2020 Headline: Coronavirus in Ballarat: Doctors’ call to take better care of health Abstract: Link: https://www.thecourier.com.au/story/6868979/doctors-call-on-ballarat-to-take-better-care-of-health-this-lockdown/
Selfcare September
Media Title: Canberra Weekly Media Type: Online Publish Date: 10 Sept 2020 Headline: Selfcare September Abstract: Epilepsy Action Australia’s new month-long initiative Self Care September has a life-changing message: it makes sense to put yourself first Link: https://canberraweekly.com.au/have-you-heard-slow-cooker-donations/
Purple Wiggle Lachy Gets behind Purple Day as ambassador for Epilepsy Action
Media Title: Motherpedia Media Type: Online Publish Date: 3 March 2020 Headline: Purple Wiggle Lachy Gets behind Purple Day as ambassador for Epilepsy Action Abstract: Purple Wiggle Lachy jumped at the chance to become an Ambassador for Epilepsy Action Australia; epilepsy has been a part of Lachy’s family’s life for as long as he canRead More…
Understanding What Epilepsy Means
Media Title: The Advocate Media Type: Online Publish Date: 3 March 2020 Headline: Understanding Epilepsy Abstract: Letter to the Editor from the CEO of Epilepsy Action Australia Link: https://www.theadvocate.com.au/story/6656887/clearing-native-forest-is-not-sustainable/
See Purple and support epilepsy awareness
Media Title: Portnews Media Type: Newspaper Publish Date: 26 February 2020 Headline: See Purple and support epilepsy awareness Abstract: Letter to the Editor from the CEO of Epilepsy Action Australia Link: https://www.portnews.com.au/story/6651076/see-purple-and-support-epilepsy-awareness/
‘Significant help’: experts, community laud launch of national epilepsy helpline
Media Title: The Sydney Morning Herald Media Type: Online Publish Date: 19 June 2019 Journalist: Rachel Chun Headline: ‘Significant help’: experts, community laud launch of national epilepsy helpline Abstract: A new service aims to help Ms Ryan (featured story) and the 250,000 other Australians living with epilepsy. Launched on Wednesday, the Epilepsy Nurse Line providesRead More…
‘Significant help’: experts, community laud launch of the national epilepsy helpline
Media Title: Cure Epilepsy Media Type: Online Publish Date: 18 June 2019 Headline: ‘Significant help’: experts, community laud launch of national epilepsy helpline Abstract: A new service aims to help Ms Ryan (featured story) and the 250,000 other Australians living with epilepsy. Launched on Wednesday, the Epilepsy Nurse Line provides access to nurses trained inRead More…
The Epilepsy Nurse Line from 9am to 5pm seven days a week
Media Title: The Bellingen Shire: Courier Sun Media Type: Online Publish Date: 19 June 2019 Headline: The Epilepsy Nurse Line from 9am to 5pm seven days a week Abstract: An Australian-first telephone and email service to support people living with epilepsy and their families has been launched today by Epilepsy Action Australia, the country’s longestRead More…
Australia launches helpline to support people living with epilepsy
Media Title: Lithgow Local Paper – Village Voice Media Type: Online Publish Date: 20 June 2019 Headline: Australia launches helpline for people living with epilepsy Abstract: An Australian-first telephone and email service to support people living with epilepsy and their families has been launched today by Epilepsy Action Australia, the country’s longest serving provider ofRead More…
Epilepsy nurse helpline launched
Media Title: The Limbic Media Type: Online Publish Date: 20 June 2019 Journalist: Michael Woodhead Headline: Epilepsy nurse helpline launched Abstract: People with epilepsy now have access to a national epilepsy nurse helpline service via phone and email. Link: https://thelimbic.com/neurology/epilepsy-nurse-helpline-launched/
Lifeline at last for those living with chronic epilepsy condition
Media Title: Local News Plus Media Type: Online Publish Date: 26 June 2019 Headline: Lifeline at last for those living with chronic epilepsy condition Abstract: Donna Shrimpton of St Peters is among the winners after Epilepsy Action Australia last week launched a new national helpline specifically for people with epilepsy and their families. Link: https://www.localnewsplus.com.au/?p=7076
New Epilepsy Nurse Line
Media Title: Canowindra Phoenix Media Type: Online Publish Date: 26 June 2019 Headline: Snippets: New Epilepsy Nurse Line Abstract: Epilepsy Action Australia has launched a new national helpline specifically for people with epilepsy and their families. Link: https://www.canowindraphoenix.com.au/snippets-159/
Helpline launched for people living with epilepsy
Media Title: Mirage News Media Type: Online Publish Date: 19 June 2019 Headline: Australia launches helpline for people living with epilepsy Abstract: An Australian-first telephone and email service to support people living with epilepsy and their families has been launched today by Epilepsy Action Australia, the country’s longest serving provider of education and support servicesRead More…
TikTok ‘seizure challenge’ sparks outrage for mocking life threatening disorder
Media Title: 9Now Media Type: Online Publish Date: 1 May 2020 Journalist: Tineka Everaadt Headline: TikTok ‘seizure challenge’ sparks outrage for mocking life threatening disorder Abstract: A social media craze where teens pretend to have a seizure for “fun” has parents and advocacy groups outraged. Link: https://9now.nine.com.au/a-current-affair/tiktok-seizure-challenge-sparks-outrage-and-ridicules-epilepsys-severity/9cfcdbd1-18ff-4c74-9b1c-b65d71a7b772
What is TikTok’s Seizure Challenge? Here’s why charities are trying to put a stop to it!
Media Title: HITC Media Type: Online Publish Date: 1 May 2020 Journalist: Ella Kipling Headline: What is TikTok’s Seizure Challenge? Here’s why charities are trying to put a stop to it! Abstract: Charities have even had to get involved to condemn the challenge and push for better seizure and epilepsy awareness in schools and onlineRead More…
Australians living with epilepsy now have access to a new helpline!
Media Title: Tuberous Sclerosis Australia Media Type: Online Headline: Australians living with epilepsy now have access to a new helpline! Abstract: Tuberous Sclerosis Australia spreads the word on the Epilepsy Nurse Line Link: https://tsa.org.au/epilepsy-helpline/epilepsy-nurse-line/
Our Nurse line support
Media Title: Campaspe News Media Type: Online Publish Date: 3 July 2019 Headline: Nurse line support Abstract: An Australian-first telephone and email service to support people living with epilepsy and their families has been launched by Epilepsy Action Australia.
Nurse line support
Media Title: The Corowa Free Press Media Type: Online Publish Date: 19 July 2019 Headline: Nurse line support Abstract: An Australian-first telephone and email service to support people living with epilepsy and their families has been launched by Epilepsy Action Australia. Link: https://www.corowafreepress.com.au/2019/07/03/664457/nurse-line-support
New Epilepsy Nurse Helpline supports sufferers
Media Title: Australian Nursing & Midwifery Journal Media Type: Online Publish Date: 18 September 2019 Headline: New Epilepsy Nurse Helpline supports sufferers Abstract: A national Epilepsy Nurse Helpline has been launched in a bid to improve health outcomes for the 250,000 Australians living with the neurological disorder, especially those in rural and remote who mayRead More…
Meeting the challenges of living with epilepsy
Media Title: The Age Media Type: Online Publish Date: 25 October 2019 Headline: Meeting the challenges of living with epilepsy Abstract: Epilepsy Action Australia provides support for families in a variety of ways. This includes access to specialised nurses, an Epilepsy Nurse Line (phone and email support) and online tools such as MyEpilepsyKey and StrongRead More…
TikTok Juice WRLD ‘seizure challenge’ sparks outrage from advocates
Media Title: 7News Media Type: Online Publish Date: 30 April 2020 Journalist: Louisa Cheatley with Emily Olle Headline: TikTok Juice WRLD ‘seizure challenge’ sparks outrage from advocates Abstract: A social media craze is being slammed for making fun of people with epilepsy. TikTok videos of people pretending to have seizures have prompted a desperate pleaRead More…
CEO of Epilepsy Action Australia slams “appalling” TikTok ‘seizure challenge’ trend
Media Title: Viva Communications Media Type: Online Publish Date: 1 May 2020 Journalist: “vivapaul” Headline: CEO of Epilepsy Action Australia slams “appalling” TikTok ‘seizure challenge’ trend Abstract: CEO of Epilepsy Action Australia, Carol Ireland, released a public statement yesterday, following a recent controversial viral trend on the video app TikTok, known as the “seizure challenge”.Read More…
Products for epilepsy patients arrives in Australia
Media Title: Cannabis Intel Media Type: Online Publish Date: 28 January 2019 Headline: Affordable products for epilepsy patients arrives in Australia Abstract: MGC Pharma has also collaborated with Epilepsy Action Australia to develop C4E (cannabis for epilepsy), to provide education to epilepsy sufferers and their families on medicinal cannabis and its interaction with the illness.Read More…
MGC Pharmaceuticals announces 2019 commercialisation strategy
Media Title: Kalkine Media Media Type: Online Publish Date: 3 April 2019 Headline: MGC Pharmaceuticals announces 2019 commercialisation strategy Abstract: Includes the C4E education platform in collaboration with Epilepsy Action Australia, among others. Link: https://kalkinemedia.com/au/news/mgc-pharmaceuticals-announces-2019-commercialisation-strategy
MGC Pharma: Pushing the envelope of phytocannabinoid-based research
Media Title: Health Europa Media Type: Online Publish Date: 11 April 2019 Headline: MGC Pharma: Pushing the envelope of phytocannabinoid-based research Abstract: MGC Pharma has a strong relationship with Epilepsy Action Australia, the country’s peak patient advocacy association. The relationship is varied, including collaboration on research, provision of information to patients, and more. In 2019,Read More…
Medical Cannabis System So Tricky, ‘Doctor Google’ Used By Epilepsy Patients
Media Title: 10 Daily Media Type: Online Publish Date: 18 September 2019 Journalist: Josh Butler Headline: Medical Cannabis System So Tricky, ‘Doctor Google’ Used By Epilepsy Patients Abstract: Australian doctors lack knowledge about medical cannabis, a leading epilepsy group has said, as it launches a new tool to educate those with the condition about howRead More…
New medicinal cannabis and epilepsy website helping Australians to make more informed decisions
Media Title: NIB Foundation Media Type: Online Publish Date: 18 September 2019 Headline: New medicinal cannabis and epilepsy website helping Australians to make more informed decisions Abstract: In partnership with Epilepsy Action Australia, we’ve helped to launch a new website which aims to help thousands of Australians living with epilepsy to make more informed choicesRead More…
Medicinal Cannabis And Epilepsy
Media Title: Ultra 106.5FM Media Type: Online Headline: Medicinal Cannabis And Epilepsy Abstract: A new website aims to help thousands of Australians living with epilepsy, particularly those with devastating medication resistant types, make informed choices when it comes to medicinal cannabis. Link: https://ultra106five.com/medicinal-cannabis-epilepsy/
Epilepsy Action Australia and SUDEP Action Partnership
Media Title: Health Professional Radio Media Type: Online Publish Date: 31 October 2017 Journalist: Tabetha Moreto Headline: Epilepsy Action Australia and SUDEP Action Partnership Abstract: TRANSCRIPT from Audio – In today’s interview, Carol Ireland talks about the new partnership that her organization has forged with SUDEP Action in order to tackle epilepsy and SUDEP whichRead More…
GP’s son dies in sleep from condition she’s never heard of
Media Title: News.com.au Media Type: Online Publish Date: 21 October 2019 Journalist: Stephanie Bedo Headline: GP’s son dies in sleep from condition she’s never heard of Abstract: To improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy, Epilepsy Action Australia is launching the SUDEP and SeizureRead More…
Anny Marrett got a phone call no parent ever wants to get
Media Title: Head Topics Media Type: Online Publish Date: 22 October 2019 Journalist: Stephanie Bedo Headline: Anny Marrett got a phone call no parent ever wants to get Abstract: To improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy, Epilepsy Action Australia is launching the SUDEPRead More…
UK epilepsy safety tool released in Australia
Media Title: SUDEP.org Media Type: Online Publish Date: 22 October 2019 Headline: UK epilepsy safety tool released in Australia in time for global awareness day Abstract: On 23 October, SUDEP Action Day, Epilepsy Action Australia welcome the launch of the SUDEP & Seizure Safety Checklist to health professionals in Australia. Link: https://sudep.org/article/uk-epilepsy-safety-tool-released-australia-time-global-awareness-day
SUDEP Action partner with Epilepsy Action Australia for global awareness campaign
Media Title: SUDEP.org Media Type: Online Publish Date: 20 October 2017 Headline: SUDEP Action partner with Epilepsy Action Australia for global awareness campaign Abstract: SUDEP Action has established an exciting new collaboration with Epilepsy Action Australia in time for SUDEP Action Day 2017. This collaboration provides the most current information related to epilepsy-related death toRead More…
UK epilepsy safety tool released in Australia in time for global awareness day
Media Title: Sudep Action Day Media Type: Online Headline: UK epilepsy safety tool released in Australia in time for global awareness day Abstract: On 23 October, SUDEP Action Day, Epilepsy Action Australia welcome the launch of the SUDEP & Seizure Safety Checklist to health professionals in Australia. Link: http://sudepactionday.org/about/press-and-video/
Families Aren’t Being Warned About ‘Cruel’ Sudden Epilepsy Deaths
Media Title: 10 Daily Media Type: Online Publish Date: 23 October 2019 Journalist: Emma Brancastisano Headline: Families Aren’t Being Warned About ‘Cruel’ Sudden Epilepsy Deaths Abstract: Today, October 23, is SUDEP Action Day. To mark it the EAA has launched an Australian-first online tool to increase awareness of SUDEP among health professionals and patients. Link:Read More…
New clinical tool to prevent premature epilepsy deaths
Media Title: AMA Victoria Media Type: Online Publish Date: 24 October 2019 Journalist: Prof Terry O’Brien Headline: New clinical tool to prevent premature epilepsy deaths Abstract: Epilepsy Action Australia has launched the SUDEP and Seizure Safety Checklist, the first clinical tool in Australia to assist neurologists, GPs and other health practitioners to discuss and monitor risk factorsRead More…
Epilepsy Action Australia launches SUDEP and Seizure Safety Checklist
Media Title: Lanham Media Media Type: Online Headline: Epilepsy Action Australia launches SUDEP and Seizure Safety Checklist Abstract: To improve knowledge and awareness of SUDEP and epilepsy mortality risk factors with clinicians and people living with epilepsy, Epilepsy Action Australia has launched the SUDEP and Seizure Safety Checklist. Link: https://www.lanhammedia.com.au/epilepsy-action-australia-launches-sudep-and-seizure-safety-checklist/
