For the Media | Epilepsy Action Australia

“People with epilepsy continually face social stigma and exclusion. A fundamental part of ridding the world of this stigma is to raise public and professional awareness.”

– World Health Organisation

Facts & Statistics

Prevalence in Australia

It is estimated that more than 266,000 Australians currently live with epilepsy (1% of the population)*, and that 1 in 25 Australians will develop epilepsy in their lifetime.
Over 13,000 Australian are diagnosed with epilepsy each year.³
Globally, it is estimated that about 65 million⁴ people are living with epilepsy.
Although epilepsy affects people of all ages, it is most common in people aged 65 and over.⁷
Epilepsy is the fourth most common neurological condition, after migraine, stroke and dementia, making it more common than Parkinson’s disease, multiple sclerosis, motor neurone disease and cerebral palsy.^{5 6}
Up to 10% of people will experience a seizure during their lifetime.10 Not all seizures are diagnosed as epilepsy.
Epilepsy can have significant social, physical and psychological consequences.
Approximately 1 in 200 Australian children are living with epilepsy.⁸
Approximate prevalence of epilepsy by state/territory (based on 1 percent of the population ABS release June 2023)⁹
• Australian Capital Territory – 4,664
• New South Wales – 83,450
• Northern Territory – 2,530
• Queensland – 54,614
• South Australia – 18,531
• Tasmania – 5,735
• Victoria – 68,184
• Western Australia – 28,832
• Australia – 266,589

*Studies indicate that 0.6 percent of our population, are living with active epilepsy in Australia. This is approximately 161,800 people. However, due to the complexity of diagnosing epilepsy and the stigma that surrounds many neurological conditions, it is difficult to get an accurate measure on the prevalence of epilepsy. It is estimated the number of people with epilepsy in Australia is approximately 260,000, or 1 percent of our population. We believe this to be a better representation of epilepsy in Australia.

Up to 10% of people will experience a seizure during their lifetime.¹⁰ Not all seizures are diagnosed as epilepsy.

Seizures and diagnosis of epilepsy

Epilepsy is diagnosed if someone has:
1. at least two unprovoked (or reflex) seizures occurring less than 24 hours apart
2. 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 seizures.
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.
Not all seizures are diagnosed as epilepsy.

Treatment

About 2 in 3 people (70%) living with epilepsy can successfully manage seizures with anti-seizure medications.
This means 1 in 3 do not gain seizure control and continue to have seizures (called ‘drug resistant epilepsy’ or ‘medication resistant epilepsy’).²⁷ Consequently, over 86,000 Australians have drug resistant epilepsy.
For people with drug resistant epilepsy other treatments may be considered such as epilepsy surgery, neurostimulation therapies and dietary therapies.
People with drug resistant epilepsy should seek a referral to a comprehensive epilepsy centre to review their epilepsy as soon as possible to get the best outcome. Almost all states in Australia have a comprehensive epilepsy centre.
Self-management, for many people living with epilepsy, can support optimal seizure control and enhance quality of life. This involves taking proactive steps to: ²⁸
• Take medication as prescribed
• Identify and avoid potential seizure triggers
• Keep a seizure diary to assist with identifying patterns and seizure triggers
• Maintain a healthy lifestyle with good diet, regular exercise and rest
• Recognise and manage stress
• Get enough sleep and having a good sleep routine
• Visit a neurologist regularly to best manage the condition
• Access available epilepsy support.

Risk of death

In Australia, epilepsy causes up to 300 deaths per year, and over half of these are related to SUDEP^{34 35}
Epilepsy is linked with an increased risk of death up to 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 circumstances leading to drowning, burns or head injury; seizure emergencies – prolonged or cluster seizures; sudden and unexplained death in epilepsy – SUDEP; and suicide.³⁶ This figure is three times higher again for Indigenous Australians.³⁷
Sadly, people with epilepsy have a twofold higher risk of completed suicide compared with people without epilepsy.³⁸
Sudden death is estimated to be nearly 24-28 times increased risk in young people with epilepsy compared to the general population.³⁹
Globally, 1 in 1000 people with epilepsy will die each year due to Sudden Unexpected Death in Epilepsy (SUDEP).³⁸
Epilepsy and seizure-related deaths are underreported in mortality data.⁴⁰

The Cost of Epilepsy

The total annual cost of epilepsy in 2019-20 in Australia was estimated at $12.3 billion. This includes costs related to health care, productivity loss, informal caring, equipment, transportation and economic efficiency.⁴¹
There were more than 31,000 hospital admissions associated with epilepsy in 2018–19, two-thirds of which recorded epilepsy as the primary reason for admission. Additionally, there were over 20,700 epilepsy-related emergency department presentations in 2018–19, with over half of these presentations requiring admission to hospital.⁴²
Every week, more than 600 Australians with epilepsy are admitted to hospital Every week, almost 400 Australians with epilepsy are admitted to a hospital emergency department.¹
The majority of epilepsy-related emergency department presentations are triaged as urgent (seen within 30 minutes). A small proportion of presentations require resuscitation.⁴³
Rates of hospitalisations are 1.3 times higher in very remote areas compared with major cities and 1.8 times higher among those living in the lowest socioeconomic areas compared with those living in the highest.⁴³

References

1 Fisher, R. S., Acevedo, C., Arzimanoglou, A., Bogacz, A., Cross, J. H., Elger, C. E., Engel, J., Jr, Forsgren, L., French, J. A.,
Glynn, M., Hesdorffer, D. C., Lee, B. I., Mathern, G. W., Moshé, S. L., Perucca, E., Scheffer, I. E., Tomson, T., Watanabe,
M., & Wiebe, S. (2014). ILAE official report: a practical clinical definition of epilepsy. Epilepsia, 55(4), 475–482.
https://doi.org/10.1111/epi.12550
2 International League Against Epilepsy (ILAE). EpilepsyDiagnosis.org. Accessed 16 Sept 2024.
https://www.epilepsydiagnosis.org/index.html
3 World Health Organisation (WHO) Epilepsy. Rates of Disease. Accessed 10 Sept 2024 https://www.who.int/newsroom/fact-sheets/detail/epilepsy
4 Ngugi, A. K., Bottomley, C., Kleinschmidt, I., Sander, J. W., & Newton, C. R. (2010). Estimation of the burden of active
and life‐time epilepsy: a meta‐analytic approach. Epilepsia, 51(5), 883-890.
5 England, M. J., Liverman, C. T., Schultz, A. M., & Strawbridge, L. M. (2012). Summary: a reprint from epilepsy across
the spectrum: promoting health and understanding. Epilepsy currents, 12(6), 245–253. https://doi.org/10.5698/1535-
7511-12.6.245
6 Australian Institute of Health and Welfare. Australian Burden of Disease Study 2023. Accessed 11 Sept 2024.
https://www.aihw.gov.au/reports/burden-of-disease/australian-burden-of-disease-study-2023/contents/interactivedata-on-disease-burden/burden-of-disease-in-australia
7 Australian Institute of Health and Welfare. Epilepsy in Australia. Accessed 11 Sept 2024.
https://www.aihw.gov.au/reports/chronic-disease/epilepsy-in-australia/contents/how-many-australians-have-epilepsy
8 The Royal Children’s Hospital Melbourne. About Epilepsy. Accessed 11 Sept 2024.
https://www.rch.org.au/neurology/patient_information/about_epilepsy/
9 Australian Bureau of Statistics. National, state and territory population. Latest Release Dec 2023
https://www.abs.gov.au/statistics/people/population/national-state-and-territory-population/latest-release#statesand-territories
10 World Health Organisation (WHO) Epilepsy. Overview. Accessed Aug 10 2024 https://www.who.int/news-room/factsheets/detail/epilepsy
† *calculation based on admissions and presentations reported in AIHW (2022) Epilepsy in Australia accessed 16 September 2024
EPILEPSY ACTION AUSTRALIA – KEY MESSAGES 2024 | 8
11 Australian Institute of Health and Welfare. Epilepsy in Australia. Updated Mar 2022. Accessed 10 Sept 2024.
https://www.aihw.gov.au/reports/chronic-disease/epilepsy-in-australia/contents/how-many-australians-have-epilepsy

12 Archer, J., & Bunby, R. (2006). Epilepsy in indigenous and non‐indigenous people in far North Queensland. Medical journal of Australia, 184(12), 607-610.
13 Mayo Clinic. Epilepsy. Accessed 11 Sept 2024 https://www.mayoclinic.org/diseases-conditions/epilepsy/symptomscauses/syc-20350093
14 Beghi, E. (2020). The epidemiology of epilepsy. Neuroepidemiology, 54(2), 185-191.
15 Schachter, S. C., Garcia, P., & Dashe, J. (2019). Comorbidities and complications of epilepsy in adults. U: Up to date,
Paul Garcia ed. Up to date [Internet]. John F Dashe: Up to date.
16 Pham, T., Sauro, K. M., Patten, S. B., Wiebe, S., Fiest, K. M., Bulloch, A. G., & Jette, N. (2017). The prevalence of
anxiety and associated factors in persons with epilepsy. Epilepsia, 58(8), e107-e110.
17 Peterson CL, Walker C, Shears G. (2014) The social context of anxiety and depression: exploring the role of anxiety
and depression in the lives of Australian adults with epilepsy. Epilepsy Behav. 2014;34:29-33
18 Cerebral Palsy Alliance. About Cerebral Palsy. Accessed 11 Sept 2024. https://cerebralpalsy.org.au/ourresearch/
about-cerebral-palsy/
19 Altuna M, Giménez S, Fortea J. Epilepsy in Down Syndrome: A Highly Prevalent Comorbidity. J Clin Med. 2021;10(13).
20 Migraine Australia. Comorbidities of Migraine (2020) Accessed 11 Sept 2024
https://www.migraine.org.au/comorbidities
21 Galovic, M., Ferreira-Atuesta, C., Abraira, L., Döhler, N., Sinka, L., Brigo, F., Bentes, C., Zelano, J., & Koepp, M. J.
(2021). Seizures and Epilepsy After Stroke: Epidemiology, Biomarkers and Management. Drugs & aging, 38(4), 285–299.
https://doi.org/10.1007/s40266-021-00837-7
22 Goyal, M., Mishra, P., & Jaseja, H. (2023). Obstructive sleep apnea and epilepsy: understanding the pathophysiology of the comorbidity. International journal of physiology, pathophysiology and pharmacology, 15(4), 105–114.
23 Robertson, J., Hatton, C., Emerson, E., & Baines, S. (2015). Prevalence of epilepsy among people with intellectual
disabilities: a systematic review. Seizure, 29, 46-62.
24 Fan, H. C., Chiang, K. L., Chang, K. H., Chen, C. M., & Tsai, J. D. (2023). Epilepsy and Attention Deficit Hyperactivity
Disorder: Connection, Chance, and Challenges. International journal of molecular sciences, 24(6), 5270.
https://doi.org/10.3390/ijms24065270
25 Andersen, N. B., & Jørgensen, N. R. (2022). Impaired bone health as a co-morbidity of epilepsy. Best Practice &
Research Clinical Rheumatology, 36(3), 101755.
26 Besag, F. M. (2017). Epilepsy in patients with autism: links, risks and treatment challenges. Neuropsychiatric disease and treatment, 1-10.
27 Perucca, P., Scheffer, I. E., & Kiley, M. (2018). The management of epilepsy in children and adults. Medical Journal of Australia, 208(5), 226-233.
28 Bautista, R. E. D. (2017). Understanding the self-management skills of persons with epilepsy. Epilepsy & Behavior, 69,7-11.
29 Lawson, J., O’Brien, T., Graham, M., Renaud, E., Jones, D., Freeman, J., … & Martin, J. H. (2022). Expert advice for
prescribing cannabis medicines for patients with epilepsy—drawn from the Australian clinical experience. British
Journal of Clinical Pharmacology, 88(7), 3101-3113.
30 Therapeutic Goods Administration, Australian Govt. Guidance for the use of medicinal cannabis in the treatment of
epilepsy in paediatric and young adult patients in Australia. V1, Dec 2017. Accessed 10 Sept 2024.
https://www.tga.gov.au/resources/resource/guidance/guidance-use-medicinal-cannabis-treatment-epilepsypaediatric-and-young-adult-patients-australia
31 Saadi, A., Patenaude, B., & Mateen, F. J. (2016). Quality of life in epilepsy—31 inventory (QOLIE-31) scores: A global comparison. Epilepsy & Behavior, 65, 13-17.
32 de Boer H. M. (2010). Epilepsy stigma: moving from a global problem to global solutions. Seizure, 19(10), 630–636.
https://doi.org/10.1016/j.seizure.2010.10.017
33 AustRoads. Assessing Fitness to Drive. Accessed 11 Sept 2024. https://austroads.com.au/publications/assessingfitness-to-drive/ap-g56/neurological-conditions/seizures-and-epilepsy
34 Australian Bureau of Statistics. Causes of Death, Australia. Accessed 10 Sept 2024.
https://www.abs.gov.au/statistics/health/causes-death/causes-death-australia/latest-release#data-downloads
35 The Florey. Sudden unexpected death in Epilepsy. Accessed 11 Sept 2024. https://florey.edu.au/research/suddenunexpected-death-in-epilepsy/
EPILEPSY ACTION AUSTRALIA – KEY MESSAGES 2024 | 9
36 Bellon, M., Panelli, R. J., & Rillotta, F. (2015). Epilepsy-related deaths: An Australian survey of the experiences and
needs of people bereaved by epilepsy. Seizure, 29, 162–168. https://doi.org/10.1016/j.seizure.2015.05.007
37 Australian Institute of Health and Welfare. Epilepsy in Australia. (2022) Accessed 16 Sept 2024
https://www.aihw.gov.au/reports/chronic-disease/epilepsy-in-australia/contents/deaths-due-to-epilepsy
38 Sirven J. I. (2015). Epilepsy: A Spectrum Disorder. Cold Spring Harbor perspectives in medicine, 5(9), a022848.
https://doi.org/10.1101/cshperspect.a022848
39 SUDEP Action. What is SUDEP? Accessed 10 Sept 2024. https://sudep.org/epilepsy-safety/what-is-sudep/
40 Panelli, R. J., & O’Brien, T. J. (2019). Epilepsy and seizure-related deaths: mortality statistics do not tell the complete story. Epilepsy & Behavior, 98, 266-272.
41 Deloitte Australia. The Economic Burden of Epilepsy in Australia (2019-2020). Accessed 10 Sept 2024.
https://www2.deloitte.com/content/dam/Deloitte/au/Documents/Economics/deloitte-au-dae-economic-burden-ofepilepsy-260220.pdf
42 Australian Institute of Health and Welfare. Epilepsy in Australia. (2022) Accessed 16 Sept 2024
https://www.aihw.gov.au/reports/chronic-disease/epilepsy-in-australia/contents/summary
43 Australian Institute of Health and Welfare. Media release 2022. National report shines light on epilepsy in Australia.
Accessed 16 Sept 2024. https://www.aihw.gov.au/news-media/media-releases/2021/march/national-report-shineslight-on-epilepsy-in-australia

Media Contacts

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

[email protected]

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.

Help us fight Stigma

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 ‘overlooked’ disease! Even though it is more common than Parkinson’s disease, multiple sclerosis and cerebral palsy, it is considered ‘uncommon’, and ignorance and fear about epilepsy and seizures remains widespread. The stigma 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 condition that 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.

Press Releases
Media Mentions

Press Releases

Epilepsy Action Australia and Nabu AI Partner to Transform the Epilepsy Care Journey

Epilepsy Action Australia and Nabu AI Partner to Transform the Epilepsy Care Journey Co-designing bespoke features on the Nabu platform built specifically for the epilepsy community, putting the right tools in the hands of individuals, families, carers and clinicians to own their care journey. Epilepsy Action Australia, the nation’s leading epilepsy support organisation, today announcedRead More…

Epilepsy Community Urges Action on Disease Burden

‘A vicious life loop’: Epilepsy community calls for action to address the burden of disease Melbourne, Australia, 14 July 2025 – The Australian epilepsy community is urging healthcare professionals and the general public to do more to support people living with epilepsy. The call follows new survey findings showing that many people living with epilepsyRead More…

Celebrating 25 Years of Progress: The Australian Pregnancy Register’s Impact on Women with Epilepsy

Since its establishment in 1999 by a dedicated team led by Prof. Frank Vajda, the Australian Pregnancy Register has been an essential resource for understanding the effects of antiseizure medications on pregnant women with epilepsy. Prof. Terry O’Brien, Prof. Cecilie Lander, Janet Graham, Alison Hitchcock, Emeritus Prof. Mervyn Eadie, and Prof. Piero Perucca have alsoRead More…

LEADING EXPERTS CALL FOR GREATER AWARENESS OF SUDDEN UNEXPECTED DEATH IN EPILEPSY – TO HELP SAVE LIVES

MEDIA RELEASE 16 October 2024 Wednesday 16 October 2024 – In Australia, 170 people die every year from Sudden Unexpected Death in Epilepsy (SUDEP).1 This occurs when an otherwise healthy person living with epilepsy dies suddenly and prematurely, with no identifiable cause of death.1 SUDEP occurs in approximately 1 in 1,000 adults with epilepsyRead More…

ANNOUNCEMENT OF MEDICAL ADVISOR TO EPILEPSY ACTION AUSTRALIA

MEDIA RELEASE 20 March 2024 ANNOUNCEMENT OF MEDICAL ADVISOR TO EPILEPSY ACTION AUSTRALIA DR KAITLYN PARRATT, neurologist and epileptologist, has been appointed the Medical Advisor to Epilepsy Action Australia. This appointment formalises and strengthens the current working partnership that Dr Parratt already has with the organisation. Dr Parratt is also Vice President ofRead More…

‘Make March Purple’ to turn things around for epilepsy

RELEASE DATE: 29 February 2024 ‘Make March Purple’ to turn things around for epilepsy Every 33 minutes a life is turned upside down by epilepsy, a neurological condition that can affect anyone at any time. This March, Australians will join footballing legend Wally Lewis to turn the nation purple and change lives. “I wish I’dRead More…

Hugging Away Hardships: Ted-E-Bear Connection Offers Support and Education for Greater Hobart Children and Families Living with Epilepsy

Registrations now open In December, Epilepsy Action Australia launched a very special program in Greater Hobart providing vital social and emotional support to children with epilepsy and their families. Children registered for the Ted-E-Bear Connection program will be posted a soft, beautiful, cuddly teddy-bear to be a comforting friend when they are struggling with sadness,Read More…

Hope in Action: ‘Strong Foundations’ Nurse Support Program Addresses Unique Needs of South Australian Children Battling Epilepsy

Delivery by Telehealth to ensure equal access in city and regions The call is out for South Australian children with epilepsy to enrol in a life-changing program launched statewide by Epilepsy Action Australia in November. ‘Strong Foundations’ will provide intensive, personalised support from specialist epilepsy Registered Nurses to children and their families, aiming to helpRead More…

CUDDLY TEDDY-BEAR FRIENDS NOW AVAILABLE FOR GREATER GEELONG CHILDREN AFFECTED BY SEIZURES AND EPILEPSY

Comfort and essential support services on offer The call is out for children living with epilepsy and seizures from Greater Geelong to take part in a heartwarming new program launched by Epilepsy Action Australia in October. Each child registered for the program will receive an exciting free gift in the mail – a beautiful, cuddly,Read More…

PRESS RELEASE: New Leadership for the Board of Epilepsy Action Australia

New Leadership for the Board of Epilepsy Action Australia There has been a ‘changing of the guard’, but unwavering commitment and resolve continues for pursuit of optimal outcomes for those living with epilepsy Following its Annual General Meeting last month, the Board of Epilepsy Action Australia has selected a new leader as Chair of its BoardRead More…

PRESS RELEASE: New Board of Directors Appointments

November 2023 Epilepsy Action Australia announces the appointment of five new board members Strengthening their Board with strong commercial expertise partnered with lived experience of epilepsy. Epilepsy Action Australia proudly announces the appointment of five new non-executive directors to the not-for-profit board of directors. New board members Jeff Fryer, Jayne Meyer-Tucker, Alan Shields, and DavidRead More…

PRESS RELEASE: New study reveals gaps in Australians’ understanding of epilepsy

New study reveals gaps in Australians’ understanding of epilepsy • New research reveals that 25% of Australians do not know the specifics of epilepsy as a health condition. • One third of Australians (30%) express interest in learning more about epilepsy. • 60% of Australians are not aware of drug resistant epilepsy, includingRead More…

PRESS RELEASE: Sydney Opera House lights up purple to raise awareness for Epilepsy Action Australia

Sydney Opera House lights up purple to raise awareness for Epilepsy Action Australia Purple Day for Epilepsy Awareness – March 26, 2021 This March, for the first time ever, the Sydney Opera House will light up purple for Epilepsy Action Australia on Purple Day to raise awareness for epilepsy. Every year, Epilepsy Action Australia worksRead More…

PRESS RELEASE: From Outrage to relief, as TikTok releases new feature to avoid seizure triggers

FROM OUTRAGE TO RELIEF, AS TIKTOK RELEASES NEW FEATURE TO AVOID SEIZURE TRIGGERS RELEASE DATE: 26 November 2020 Epilepsy Action Australia is delighted that TikTok have announced a new feature to avoid triggering seizures. TikTok personally wrote to the CEO, Carol Ireland, of Epilepsy Action Australia to advise that they are making TikTok more accessibleRead More…

PRESS RELEASE: The Million Dollar Teddy Bear

EPILEPSY ACTION AUSTRALIA INTRODUCES THE MILLION DOLLAR TEDDY BEAR TO FUND CARE FOR 250,000 AUSTRALIANS WITH EPILEPSY RELEASE DATE: 18 November 2020 In a bold bid to raise funds for essential services for the hundreds of thousands of Australians who are affected by epilepsy, Epilepsy Action Australia have launched an innovative charity campaign called “TheRead More…

PRESS RELEASE: Selfcare September

SELFCARE SEPTEMBER RELEASE DATE 1st September 2020 It’s all about you in SELF CARE SEPTEMBER, as Epilepsy Action Australia launches an essential new wellness initiative Epilepsy Action Australia’s new month-long initiative SELF CARE SEPTEMBER has a life-changing message: it makes sense to put yourself first. SELF CARE SEPTEMBER encourages all Australians to look after themselvesRead More…

PRESS RELEASE: Outrage over sick TikTok stunt

As users post sick videos faking seizures and deaths, Epilepsy Action Australia calls for a ban and apology from TikTok. Australia’s leading epilepsy support organisation has slammed a horrifying TikTok trend that features users faking seizures and even deaths. In TikTok’s ‘seizure challenge,’ young people pretend to suffer or die from a fit, accompanied byRead More…

PRESS RELEASE: Epilepsy Nurse Line

Australian helpline launched for people living with epilepsy 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 services to people with epilepsy. The Epilepsy Nurse Line, which is available from 9am toRead More…

PRESS RELEASE: Forgotten condition remembered

FORGOTTEN CONDITION REMEMBERED Epilepsy Action Australia is delighted with Greg Hunt’s commitment to further support a long neglected condition. The announcement this week by The Hon. Greg Hunt, Minister for Health that the government has allocated $20million dollars to further support people living with epilepsy builds on an initiative carefully planned and developed by EpilepsyRead More…

PRESS RELEASE: Purple Day 2019

Do you know what to do if someone has a seizure? Purple Day for Epilepsy Awareness – March 26, 2019 For Purple Day 2019 (March 26) people with epilepsy are encouraging the Australian community to watch a short video illustrating the basics of seizure first aid in order to reduce the fear they may experienceRead More…

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

Ground-breaking medicinal cannabis and epilepsy website helps Australians living with epilepsy make informed decisions. 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. Launched by Epilepsy Action Australia, the leading provider of epilepsy support and informationRead More…

PRESS RELEASE: Purple Day 2020

250,000 Shades of Purple: Epilepsy does not look the same for everyone Purple Day for Epilepsy Awareness – March 26, 2020 MEDIA MENTIONS: https://www.newcastleherald.com.au/story/6649108/purple-reigns-on-march-26/ https://www.female.com.au/freya-pearson-purple-day-for-epilepsy-awareness-interview.htm https://hobartobserver.com.au/?p=4175 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 personRead More…

PRESS RELEASE: Purple Wiggle Ambassador

Purple Wiggle Lachy gets behind Purple Day as Ambassador for Epilepsy Action Australia Purple Day for Epilepsy Awareness is March 26, 2020 MEDIA MENTIONS: http://www.motherpedia.com.au/article/purple-wiggle-lachy-gets-behind-purple-day-as-ambassador-for-epilepsy-actio https://www.bountyparents.com.au/expert-advice/purple-wiggle-lachy-gillespie-purple-day-epilepsy/ Epilepsy Action has also arranged for the sails of Sydney Opera House to light up purple on Purple Day, raising awareness of epilepsy for the first time Epilepsy ActionRead More…

United in Purpose: Key Epilepsy Organisations Join Forces

In a show of unity across state/territory borders, three leading epilepsy organisations: Epilepsy WA, Epilepsy Action Australia, and The Epilepsy Centre (SA & NT), have joined forces to launch Step 4 Epilepsy, a national awareness and fundraising campaign aimed at improving the lives of the 270,000 Australians living with epilepsy. More than just a fundraiser,Read More...

‘It’s actually dangerous’: Why Australia won’t follow UK epilepsy drug rules

Media Title: ‘It’s actually dangerous’: Why Australia won’t follow UK epilepsy drug rules Media Type: Online Publish Date: 10 August 2025 Abstract: When Thomas Mezger woke dazed on his balcony last week with a smashed table beneath him, he knew the cause of the damage immediately, even though he had no recollection of it.“I hadRead More…

Building safer and inclusive school environments with epilepsy training

Media Title: Building safer and inclusive school environments with epilepsy training Media Type: Online Publish Date: 29 July 2025 Abstract: Having worked in the sector for over 18 years, I have gained valuable insight into the challenges faced by children with epilepsy. I have witnessed firsthand the profound difference that awareness and education can makeRead More…

Survey confirms vicious cycle of epilepsy and anxiety

Media Title: Survey confirms vicious cycle of epilepsy and anxiety Media Type: Online Publish Date: 26 July 2025 Abstract: After years of anxiety living with epilepsy Rosie Connell-Moller got her life back on track thanks to a game-changing implant that sends signals to her brain to calm it down. The 40-year-old is now a full-timeRead More…

The new campaign to reach thousands of Australians with drug resistant epilepsy that fall through the treatment gap

Media Title: LivaNova Media Release Media Type: Online Publish Date: 19 March 2024 Headline: A new campaign focused on helping Australians living with drug-resistant epilepsy to better understand available treatment options and access them sooner was launched today. Abstract:A new campaign, “Mind the Treatment Gap,” has been launched to address the alarming treatment gap facedRead More…

Nearly 600 young suffering epilepsy

Media Title: Local News Pub Media Type: Online Publish Date: 6 November 2023 Headline: Nearly 600 young suffering epilepsy Abstract: BORN with cerebral palsy and still not talking or walking at seven, Jonah Issa also has epilepsy which he was diagnosed with at 16 months. Link: https://www.localnewsplus.com.au/nearly-600-young-suffering-epilepsy/

Empowering Hope: UCB Australia’s Commitment to Childhood Epilepsy Research

Media Title: UCB Australia Media Type: Online Publish Date: 27 October 2023 Headline: Empowering Hope: UCB Australia’s Commitment to Childhood Epilepsy Research Abstract: UCB Australia has announced a research grant aimed at achieving early diagnosis and better outcomes for children living with severe genetic childhood epilepsy. Link: https://www.ucb.com/Patients/magazine/detail/article/Empowering-Hope-UCB-Australia-s-Commitment-to-Childhood-Epilepsy-Research

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

Media Title: Bored Panda Media Type: Online Publish Date: 2 December 2020 Headline: 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 Abstract: In late 2018, I was out for dinner with my son Roarke and daughter Lila. We wereRead More…

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/

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…

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/

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…

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/

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…

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.

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/

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…

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…

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

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/

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…