Facts and Statistics

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Need to Know Facts and Statistics About Epilepsy

Epilepsy General

  • Epilepsy is a disease of the brain that affects people of all ages
  • A person who has epilepsy has a tendency to have spontaneous, recurrent seizures
  • An estimated 65 million people worldwide* have epilepsy and 80% of them live in developing countries
  • Approximately 3% to 3.5% of Australians will experience epilepsy at some point in their lives
  • While all people with epilepsy experience seizures, not all people who have seizures have epilepsy.
    • Some seizures happen as a result of injury or illness. This can include: concussion or a head injury; serious infection, illness or fever; drug overdose or alcohol withdrawal. These seizures do not have the tendency to recur (unless the underlying cause recurs). They are generally considered a “once off” seizure.**
  • Approximately 1 percent of Australians are currently living with epilepsy.

Diagnosis and Prognosis

  • In Australia, over 12,000 people a year are diagnosed with epilepsy***
  • Seizures can begin at any age, but epilepsy is most frequently diagnosed in childhood and people over 65 years of age. In fact, the incidence of epilepsy and seizures is higher in the over 65’s than in any other age group.
  • At least 15% of people referred to an epilepsy specialist centre do not actually have epilepsy and have been previously misdiagnosed
  • Epilepsy is diagnosed if someone has:
    • at least two unprovoked (or reflex) seizures
    • one unprovoked (or reflex) seizure and a probability of further seizures happening
    • diagnosis of an epilepsy syndrome.
  • Epilepsy is not necessarily a lifelong disorder.
    • Many people have seizures that stop by a certain age, or have a long-term remission from seizures.
  • When seizures have not occurred for a long time, epilepsy is considered ‘resolved’. This can be in someone who:
    • has an age-dependent epilepsy syndrome and is older than the relevant age
    • is seizure-free for 10 years, and not taking anti-seizure medication for the last 5 years.
  • Epilepsy is linked 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 circumstances leading to drowning, burns or head injury
    • seizure emergencies – prolonged or cluster seizures
    • sudden and unexplained death in epilepsy – SUDEP
    • stopping breathing during a seizure
    • treatment related death
    • suicide.

Types of Seizures

  • It is commonly thought that seizures always involves convulsions. In fact there are around 40 different types of epilepsy and epilepsy syndromes and many seizures are not convulsive
  • Seizures can vary from the briefest lapses of attention, confusion or unusual behaviours, to falls or convulsions
  • Seizures can also vary in frequency, some people may have less than 1 per year while others may have several a day
  • Not all seizures are epilepsy.

Treatment

  • With treatment, 2 in 3 people with epilepsy can be seizure free
  • About three quarters of people in developing countries do not get the treatment they need
  • After 2 to 5 years of successful treatment and being seizure-free, medications can be withdrawn in about 70% of children and 60% of adults without later relapse
  • A small percentage of people may be suitable for epilepsy surgery
    • Over half the number of people who have surgery become seizure free long term. Many others have fewer or less severe seizures after surgery.
  • Other treatment options for people who cannot obtain seizure control with medications include
    • Vagus Nerve Stimulation,
    • Dietary therapies – Ketogenic Diet, Modified Atkins Diet
    • Deep Brain Stimulation.

Lifestyle

  • Epilepsy is more than just seizures. Epilepsy can have a significant social and psychological impact and affects independence, driving, learning, employment, relationships, mental health and quality of life
  • People with epilepsy often face social stigma, discrimination and exclusion. A fundamental part of reducing this stigma is to raise public and professional awareness.
  • People with epilepsy can obtain a driver’s licence if their seizures are controlled by medication or if they fulfil conditions and guidelines set out by the driving authorities.
  • Epilepsy is not a mental illness, but people with epilepsy are at higher risk of anxiety and depression.
References:
* Solomon L Moshé, Emilio Perucca, Philippe Ryvlin, Torbjörn Tomson. Epilepsy. The Lancet Published online: September 23, 2014
**Beghi E: The Epidemiology of Epilepsy. Neuroepidemiology 2020;54:185-191. doi: 10.1159/000503831
***WHO Epilepsy. Key Facts. 2019
International League Against Epilepsy 2020
Anuradha Singh, Stephen Trevick, The Epidemiology of Global Epilepsy, Neurologic Clinics, Vol 34 Issue 4, 2016, 837-847
Based upon a combination of WHO figures, & population figures obtained from ABS. Updated 23/11/2021. Australia’s population was 25,704,340 on 31 March 2021 (ABS) 1 1 https://www.abs.gov.au/statistics/people/population/national-state-and-territory-population/latest-release#states-and-territories Accessed 23 Nov 2021 AUSTRALIA Pop. 25,704,340  Australian Epilepsy Pop. 257,043
https://www.epilepsydiagnosis.org/index.html  Accessed 18 Feb 2022 (count of seizure types and syndromes listed by ILAE)