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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 may happen after an acute insult to the brain (eg head injury) or toxic or systemic illness (eg febrile seizure, drug overdose, alcohol withdrawal) and do not have the tendency to recur (unless the underlying cause recurs). They are generally considered a “once off” seizure.**
  • Over 250,000 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 (over 65’s more commonly than children)
  • 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 outgrow or have a long-term remission from seizures.
  • Epilepsy is considered ‘resolved’ in someone who:
    • has an age-dependent epilepsy syndrome and is older than the applicable 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 repetitive seizures
    • sudden and unexplained causes – SUDEP
    • stopping breathing during a seizure
    • treatment related death
    • suicide.

Types of Seizures

  • It is commonly thought that epilepsy 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, up to two-thirds of 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 often affects independence, learning, employment opportunities, 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 fulfill 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