ABOUT EPILEPSY BACKGROUNDER
EMBARGOED: THURSDAY, MARCH 26, 2020
• Epilepsy is a common neurological (brain) disease1 involving recurrent seizures, caused by a temporary disruption of electrical activity in the brain.
• There are many different types of epilepsy – some are age-contingent, while others are life-long.
• The disease can develop at any age, regardless of gender or ethnicity.
• However epilepsy is more likely to be diagnosed in childhood or senior years, noting children represent approximately 40 per cent of newly diagnosed cases of epilepsy.
• A person may be diagnosed with epilepsy if they have:
- at least two unprovoked seizures occurring greater than 24 hours apart;
- one unprovoked seizure and a high probability of a second; or
- a diagnosis of an epilepsy syndrome.
Prevalence & incidence
• Epilepsy affects approximately 50 million people world-wide.
• Around one in 100, or 250,000 Australians are living with epilepsy.
• An estimated three-to-four per cent of Australians will develop epilepsy in their lifetime.
• The exact cause of epilepsy is unknown in up to 70 per cent of all cases (children and adults) living with the disease.
• Some of the known causes of epilepsy include head trauma, central nervous system (CNS) infections, brain tumours, stroke, brain damage from prenatal or perinatal causes, and congenital or genetic conditions.
• A seizure is a result of abnormal, excessive or recurring electrical activity in the brain, noting not all seizures are epilepsy-related.
• There are different types and classifications of epileptic seizures, ranging from a brief lapse in attention or a muscle jerk, to severe and prolonged convulsions, and loss of consciousness.
• Seizures can also vary in frequency, from less than one episode per year, to several in a day.
• A person living with epilepsy can experience any one, or more, of the following, common seizures:
- Focal (or partial) seizures occurring in one part of the brain, including both those with retained awareness and those with a loss of awareness;
- Generalised seizures caused by widespread seizure activity in the whole brain, including:
o Absence seizures causing the individual to blank out, or stare into space, in the absence of convulsions, usually lasting only two-to-10 seconds;
o Tonic-clonic seizures involving a loss of consciousness and alternating stiffness and jerking; and
o Myoclonic seizures involving abrupt muscle jerks.
Seizure first aid
• Absence seizures usually do not require first-aid, although it is recommended to stay with, and reassure the affected person when their seizure is over.
• In the event of a tonic-clonic or myoclonic seizure, recommendations suggest:
- Moving any harmful objects away from the person experiencing the seizure;
- Protecting the head by placing something soft under the head and shoulders;
- As soon as possible after the seizure is over, rolling the person onto their side to assist breathing;
- Reassuring the person when the seizure is over until they are fully aware of their surroundings;
- Not restraining the person;
- Not placing anything in the person’s mouth; and
- Timing the seizure, and calling an ambulance (000) if the seizure lasts longer than five minutes, the person has been injured, another seizure quickly follows, or the person remains unresponsive for more than five minutes after the previous seizure.
• In the event of a focal seizure, recommendations suggest:
- Staying with, and speaking calmly to the person in an attempt to influence their behaviour;
- Reassuring the person until they are aware of their surroundings, and offering them assistance; and
- Calling an ambulance (000) should the seizure last five or more minutes, another seizure quickly follows, the person fails to recover from the seizure after five minutes, or if the person has been injured.
Quality of life
• Data from the 2017 Epilepsy Foundation national longitudinal survey revealed:
- 20 per cent of respondents earned less than $250/week;
- More than 50 per cent of respondents had experienced seizures over the previous year;
16 per cent reported one or more a week;
- 37 per cent of respondents had sustained an injury due to their seizures in the last three years;
- 37 per cent of respondents had been hospitalised as a result of their seizures;
- 15 per cent of respondents had undergone surgery for their epilepsy;
- 45 per cent of respondents reported their epilepsy compromised their ability to drive, the type of paid work they could perform (36 per cent), and their future plans and ambitions (33 per cent);
- A significant proportion reported experiencing employment and financial difficulty, despite many having a university qualification, noting less than 50 per cent of respondents were in paid employment.
• People living with epilepsy have a premature mortality rate of up to three times higher than the general population.
• In Australia, epilepsy causes approximately 300 deaths per year.
• A frequent cause of epilepsy-related death is Sudden Unexpected Death in Epilepsy (SUDEP), where sudden death occurs in a person with epilepsy for no apparent reason.
• The presence of seizures is often the determining factor in the diagnosis of epilepsy.
• A doctor can develop a diagnosis using an eyewitness account, and an individual’s description of their seizure(s) and symptoms.
• Epilepsy specialists can perform a neurological exam using electroencephalography (EEG) to measure the brain's electrical activity, in order to determine a clinical diagnosis of epilepsy.
• Epilepsy specialists may also require specialised imaging tests, such as computerised tomography [CT] scans and magnetic resonance imaging [MRI] scans, along with blood tests, to confirm a diagnosis.
• A tailored epilepsy management plan may help minimise the effect of the disease (including seizures) on their daily lives.
• An epilepsy management plan can include:
- Taking medication as prescribed;
- Visiting a neurologist to optimally manage their disease;
- Learning to identify and manage potential triggers for seizures by keeping a seizure diary;
- Maintaining a healthy, balanced lifestyle;
- Developing and maintaining a ‘seizure management plan’ to educate family, friends, school or workplace colleagues about what to do in the event of a seizure;
- Accessing available epilepsy support networks; and
- Learning more about the disease.
• Management with antiepileptic medication generally helps to control seizures in 60 to 70 per cent of those diagnosed with epilepsy. In others, seizures may continue to occur, but with less frequency.
• Certain types of epilepsy may be suitable for surgery, particularly for those with drug-resistant seizures.
• Non-drug treatments may also be considered for some patients.
For more information, please contact Kirsten Bruce, Holly Hamilton Green or Bella Poidevin from VIVA! Communications on 02 9968 3741 or 0401 717 566, 0434 799 839 or 0423 041 631.
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