“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
Help Us Fight the 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 ‘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.
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.
Facts and Statistics
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.
- 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
*Figures are based on Australian population in Feb 2017 of 24.6 million.
Brodie MJ, Schachter SC, Kwan P. Fast Facts: Epilepsy. 3rd Ed. Health Press, 2005, pg 9-12
World Health Organisation. International Epilepsy Day [internet]. Available online: http://www.who.int/mental_health/neurology/epilepsy/en/ [cited 2017 June 12]
Based upon a combination of WHO figures and Population figures obtained from ABS (3101.0)
Boera, HM, Mulac M, Sandera JW. The Global Burden and Stigma of Epilepsy. Epilepsy Behav. 2008 May;12(4):540–6. Available online: http://www.epilepsybehavior.com/article/S1525-5050(07)00487-8/fulltext?cc=y= [cited 207 June 12]
International League Against Epilepsy (ILAE). Definition of Epilepsy 2014 [internet]. Available online: http://www.ilae.org/Visitors/Centre/Definition-2014.cfm [cited 2017 June 12]
de Tisi J, Bell GS, Peacock JL, McEvoy AW, et. al. The long-term outcome of adult epilepsy surgery, patterns of seizure remission, and relapse: a cohort study. The Lancet. 2011 Oct: Vol 378 Issue 9800,1388–1395. Available online: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60890-8/abstract [cited 2017 June 12]
Nouri S. Sudden Unexpected Death in Epilepsy [internet]. e-medicine 2015. Available online: http://emedicine.medscape.com/article/1187111-overview [cited 2017 June 12]