Make March Purple for Epilepsy: Anna’s story

Anna Sullivan, a lawyer within our medical negligence team, shares her experience of epilepsy for Make March Purple for Epilepsy month.

Every 33 minutes, a life is turned upside down by a diagnosis of epilepsy. Make March Purple for Epilepsy is a month-long campaign to raise awareness and funds to support Australians living with epilepsy.

What is epilepsy?

Epilepsy is a brain disorder characterised by recurrent seizures. These seizures can be brief episodes of involuntary movement that may involve a part of the body or the entire body.

All seizures are caused by abnormal electrical activity somewhere in the brain. However, there are many different seizure types and syndromes. Seizures can vary from brief lapses of attention, to jerking movements, to severe and prolonged convulsions. Some people may be alert during a seizure and can remember what happened afterwards, while others may be unaware and unable to respond to those around them during a seizure. As a result, it can look very different for each person living with epilepsy.

The statistics around epilepsy

• Around 3-4% of people will develop epilepsy at some stage in their life
• 1 in 10 people will have a seizure in their lifetime
• 800,000 Australians will develop epilepsy during their lifetime
• The risk of premature death in people with epilepsy is up to three times higher than for the general population.

Anna's story

I was in high school at a touch football carnival when I had my first seizure. My tonic-clonic seizures involved falling to the ground, my body stiffening and limbs jerking, loud groaning, and a loss of consciousness. Neither I or my family had ever even seen someone have a seizure before, which made the experience all the more terrifying.

From then on, my seizures became more frequent, occurring almost daily. After six months of doctor's appointments, missing school and trips to the hospital, I was eventually diagnosed with epilepsy.

Going through high school and having frequent seizures certainly had its challenges! Some days were tough, but I was lucky to have been surrounded by an incredibly supportive family, school and community.

I was also fortunate to have been directed to Epilepsy Queensland. Being able to connect with people who were experiencing the same things as me and knowing I wasn’t alone provided some comfort. The resources and tools offered online also provided valuable education to me about my condition.

With the assistance of successful medical treatment, I am grateful to have recently passed nine years seizure-free.

What causes epilepsy?

Epilepsy is estimated to impact around 65 million people worldwide at any given time. However, the exact cause of epilepsy is unknown in approximately 60% of people living with epilepsy.

Known causes of epilepsy, such as pre-natal birth traumas, brain and spinal cord infections, traumatic brain injuries, and strokes, contribute to the development of almost 25% of all epilepsies. All of these conditions are largely preventable, and prevention treatments and early therapies play a big role in reducing the rate and impact of epilepsy.

Our specialist medical negligence lawyers work alongside many clients who suffer from catastrophic and traumatic injuries, such as birth traumas, brain injuries, infections and strokes, which can later cause epilepsy and seizures. We understand all too well how debilitating, exhausting and scary epilepsy can be for our clients and their families. 

Information and support for people living with epilepsy

If you are living with epilepsy or supporting someone living with epilepsy, you can find more information and support from the following organisations:

• Epilepsy QLD provides support to families, training to carers and can assist with developing Epilepsy Management Plans (EMPs).
• Epilepsy Smart Australia provides telephone support, tailored advice and referrals to other services for people living with epilepsy.
• NDIS funding can be obtained in some circumstances for those living with epilepsy.

Treating practitioners and neurologists will manage medical care, and provide advice about medication or other treatments.

We must continue to raise awareness so that hundreds of thousands of Australians living with epilepsy, like our client Amelia, can continue to get support and improved treatment.

Find out how you can Make March Purple this month to help empower and support Australians living with epilepsy.