Impact

• A person who has epilepsy tends to have spontaneous, recurrent seizures.

• Epilepsy affects people of all ages.

• An estimated 65 million people worldwide* have epilepsy and 80% of them live in developing countries.

• Approximately 1 in every 150 people in Australia are currently living with epilepsy.

• Up to 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 tend to recur (unless the underlying cause recurs). They are generally considered a “once-off” seizure.**

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 in people over 65 years of age. Epilepsy and seizures are seen more 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 tumor 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

Types of Seizures

• It is commonly thought that seizures always involve convulsions. 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.

• 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.

• About three-quarters of people in developing countries do not get the treatment they need.

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 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.