Stronger Together – Purple Day for epilepsy

By Epilepsy Action Australia

26 March is Purple Day – global recognition for individuals and families who live with epilepsy.

Epilepsy is a medical condition that affects the brain and causes seizures. Through ongoing support, advocacy and research by organisations like Epilepsy Action Australia, we are learning more about epilepsy, its causes and treatments.

EPILEPSY: A SNAPSHOT

Epilepsy is a disease of the brain characterised by the tendency to have recurrent seizures.

Epilepsy can be diagnosed at any age and does not discriminate.

Epilepsy can sometimes be caused by head trauma, stroke, infectious disease  of the brain, or abnormalities of the  brain from birth.

Genetics also play a role in some epilepsies, and this is an expanding area of research. About half of the people with epilepsy never know its cause.

Seizures and epilepsy can take many forms and affect people very differently. Two out of three people with epilepsy become seizure–free with treatment, however, this means one in three continue to have seizures.

WHAT IS A SEIZURE?

A seizure is a temporary disruption of the electrical activity in the brain. There are many different types of seizures that present in many ways, including changes to sensation, awareness, behaviour or movement. Not all seizures involve convulsions and not all seizures are epilepsy.

Sometimes specific events or circumstances can increase the risk of a seizure for someone with epilepsy. These are usually called seizure triggers. Recognising these triggers can help to reduce or even avoid seizures. Some common triggers include lack of sleep, missed medication, fatigue, physical or emotional stress, hormonal changes and illness.

There are many different types of seizures including: tonic clonic seizures, where the body stiffens (tonic phase) followed by general muscle jerking (clonic phase); atonic seizures where all muscle tone is lost for a few seconds; tonic seizures where the body stiffens briefly (atonic and tonic seizures previously known as drop seizures); myoclonic seizures are characterised by brief muscle jerks; absence seizures where the person stares with a brief loss of awareness; and focal seizures which have periods of confusion, disorientation and altered behaviours.

HOW IS EPILEPSY DIAGNOSED AND WHAT SHOULD I DO AS A PARENT?

Diagnosis is not always straightforward, for many families it can sometimes be a long journey, because seizures tend to happen in an unpredictable, random manner, and are only brief, plus there are other conditions which can mimic seizure symptoms, so it is usually a process of elimination before a diagnosis is made.

It is very hard to capture an event and doctors rarely see their patient have a seizure. Often, a good eyewitness description of the event is quite valuable in getting an accurate diagnosis.

If someone is thought to have had a seizure, it is most likely they will get a referral for an EEG and a neurologist appointment. Sometimes other tests or specialists may be booked to rule out other medical conditions, for example meningitis, cardiac events, fainting that can cause seizures or have symptoms similar to seizures.

Sometimes, all or many tests for epilepsy can return normal, even if seizures have occurred.

HOW IS IT TREATED?

The first choice of treatment for epilepsy is medication. However, one in three people with epilepsy continue to have seizures despite treatment. This is often called medication or drug resistant epilepsy (also known as refractory epilepsy).

Other treatment options are usually considered when medication has failed, if suitable for the person and include:

Surgery – the seizure focus is removed in people suitable for surgery, mostly the focal epilepsies or if there is a lesion causing the epilepsy.

Vagus Nerve Stimulation (VNS) – a pacemaker like device is implanted in the chest and the wires from it are wrapped around the vagus nerve to give intermittent stimulation to reduce seizures and their severity.

Ketogenic Diet or Modified Atkins Diet – dietary management of seizures with high fat diet.

Self-education and lifestyle changes (self-management) are important in managing seizures.

Medical cannabis – has proven to help improve seizures in people with the epilepsy syndromes Dravet syndrome and Lennox Gastaut syndrome. The effectiveness for other people with epilepsy is about the same as trying a new anti-seizure medication, and currently access and cost is quite prohibitive.

EPILEPSY AND RISK

Epilepsy, like other long-term conditions such as Asthma or Diabetes comes with certain risks. If left unchecked these can become very serious. Risks associated with seizures need to be discussed, no matter what type of epilepsy you have.

Unfortunately, in Australia, there are approximately 300 epilepsy-related deaths each year. They can be attributed to:

•             Accidents, drowning and injuries

•             Seizure emergencies

– most seizures stop on their own but occasionally seizures don’t stop and can become life-threatening. This can be called seizure clusters or status epilepticus and is considered a medical emergency.

Sudden Unexpected Death in Epilepsy (SUDEP) – this is when a person with epilepsy dies suddenly and prematurely and no reason for death is found.

EPILEPSY ACTION AUSTRALIA

Epilepsy Action Australia (EAA) supports and advocates for individuals with epilepsy every day. EAA represents the interests of people living with epilepsy by advocating and lobbying Australian Government. This is primarily for improvements for people with epilepsy in the areas of education, health, employment, transport and discrimination.

RESEARCH

Whilst there has been a lot of progress and many improvements and advances in epilepsy research, genetics, treatments, technologies and knowledge, there are still gaps remaining and many questions to be answered. Experts continue to pursue expanding their knowledge in this area and no doubt there are exciting times in the near future with new approaches on the horizon.

SUPPORT

A diagnosis of epilepsy can be life–changing. As a registered NDIS provider EAA can assist with comprehensive needs assessments, development and implementation of seizure management plans, education of support workers, assessment for specific safety epilepsy products and much more.

Contact Epilepsy Action Australia on 1300 37 45 37 to speak to a specialist epilepsy nurse, email [email protected] or visit epilepsy.org.au