For the Media

“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

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:
    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 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  • After two to five years of successful treatment and being seizure-free, medications can be withdrawn in about 70% of children and 60% of adults without subsequent relapse.2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:
    1. an underlying brain disease, such as a tumour or infection.
    2. accidents or seizures in dangerous circumstancesleading to drowning, burns or head injury
    3. prolonged or ongoing seizures (status epilepticus)
    4. sudden and unexplained causes – SUDEP (Sudden Unexpected Death in Epilepsy)
    5. a possible respiratory or cardio-respiratory arrest during a seizure.
    6. treatment related death
    7. suicide.7

*Figures are based on Australian population in Feb 2017 of 24.6 million.

References

  1. Brodie MJ, Schachter SC, Kwan P. Fast Facts: Epilepsy. 3rd Ed. Health Press, 2005, pg 9-12
  2.  World Health Organisation. International Epilepsy Day [internet]. Available online: http://www.who.int/mental_health/neurology/epilepsy/en/ [cited 2017 June 12]
  3.  Based upon a combination of

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.

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.

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…

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 Epilepsy

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/

‘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…

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: 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…

Australia launches helpline 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 for 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/

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/

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. Link: http://national.campaspenews.com.au/@seymour-news/2019/07/03/664457/nurse-line-support

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

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…

Affordable 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/

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 in time for global awareness day

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

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/