Epilepsy Australia

If you have seizures that cause you to fall over, a seizure head protection helmet can help keep you safe. Seizure head protection helmets protect your head when you fall. They also increase your seizure safety by reducing your risk of injury. Seizure head protection helmets are made from durable, impact-absorbing materials like foam or rigid plastics. You can adjust them to feel comfortable on your head.

Not everyone with epilepsy needs a seizure head protection helmet. If you experience frequent seizures that cause you to lose consciousness, fall and have uncontrolled movements, a seizure head protection helmet could be for you. Before deciding if you need one, talk to your doctor or a qualified healthcare professional

For information on seizure head protection helmets, please visit https://bit.ly/3XJnLAP or contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

Getting an appointment with your neurologist may take some time. It’s a good idea to use this time to prepare for your visit. You can do this by putting together a short list of the things you will need to take with you, plus a list of any questions or health concerns you may want to discuss.

Remember, your relationship with your neurologist is a partnership, and it’s in your best interests to share relevant information with them. We’ve provided the following checklist to help you get started.

For information on what to take to your appointment, questions to ask, and more, please visit https://bit.ly/4brgc4X or contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

Sudden Unexpected Death in Epilepsy (SUDEP) occurs when a person with epilepsy dies without warning, and no other cause of death can be found. Each year, one in 1000 people with epilepsy pass away from SUDEP, making it the leading cause of death from epilepsy. However, in people with poorly controlled convulsive seizures, the risk can be as high as one in 150 people.

Most recorded SUDEP cases occur at night or during sleep. Therefore, people living with epilepsy should discuss SUDEP with their neurologist – preferably early during the diagnosis stage of their epilepsy. By being well informed from the start and understanding the risk factors for SUDEP, mitigating strategies can be implemented to reduce the risk.

For further information on SUDEP, please visit https://bit.ly/3yFBe27 or contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

Executive Leaders and CEOs, Fiona Allardyce (Epilepsy ACT), Graeme Shears (Epilepsy Foundation), Chris Dougherty (Epilepsy Queensland), and Epilepsy Smart Australia Project Office Manager, Bernadette Zappa, met with Minister Bill Shorten and Clinical Director of the Victorian Aboriginal Health Service (VAHS), Lewis Rassaby, today.

The team gathered at Parliament House in Canberra and are working to ensure the NDIS works for people living with epilepsy in Australia.

Being a parent while living with epilepsy can be overwhelming, especially if you are the primary caretaker in your household. If you are struggling, knowing that you are not alone is essential.

As a parent, it can be hard to prioritise your physical and mental health. Yet, taking good care of yourself is the best way to prevent burnout and exhaustion. Remember, your health is a top priority. If you are feeling stressed and overwhelmed, it is important to recognise the warning signs and ask for help.

Here is a short list of things to look out for:
• Isolation from friends, family, and loved ones.
• Loss of interest in activities that you used to enjoy.
• Feelings of sadness, irritability, and hopelessness.
• Changes in sleep habits, appetite, and weight.
• Constantly feeling ill or getting sick.
• Intense physical and emotional fatigue (exhaustion).
• Chronic stress or anxiety.

For further information on parenting with epilepsy, please visit https://bit.ly/4aQR33B or contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

People with epilepsy do not have a higher risk of getting COVID-19. Most people who get COVID-19 experience mild to moderate symptoms and recover without complications. Practising good hygiene and taking precautions in poorly ventilated public spaces can help you avoid COVID-19.

Studies from areas that have experienced widespread COVID-19 outbreaks suggest that for most people with epilepsy, the likelihood of having increased seizures is low. However, the impact on overall health is higher due to stress, anxiety and worry.

A rapid antigen test (RAT) is the easiest way to test yourself for COVID-19. You can get them online, at pharmacies, major supermarkets, and some petrol stations. You can also use a polymerase chain reaction (PCR) test, which is available through your doctor.

For further information on epilepsy and COVID-19, please visit https://bit.ly/4bYiM3q or contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

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Navigating epilepsy can be a unique and challenging experience, but within the embrace of the 'Epilepsy creative expression' peer support group, you'll find a space to share stories, insights, and inspiration. Whether you're an artist, writer, musician, photographer or simply someone curious about the beneficial effects of creativity, our diverse community welcomes you with open arms.

Through the lens of creative expression, we explore avenues to cope with the emotional and physical aspects of epilepsy. This group serves as a platform for fostering connections, breaking down barriers, and discovering the strength that lies within each individual's unique journey.

Join us in discovering the cathartic release that creative expression can offer as we come together to inspire, uplift, and empower one another on the road to managing epilepsy with resilience and creativity.

Facilitated by a peer with lived experience, this group is self-directed and self-empowered to come together and share in a way that works best for the members. How and when the group meets will be directed by the members.

Learn more about the Peer-led Support program and join today by visiting epilepsysmart.org.au/peer-led-support-groups or contacting the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

The term ‘developmental and epileptic encephalopathies’ (DEEs) refers to a group of severe and rare types of epilepsy that usually begin during infancy or childhood.

DEEs are usually caused by changes in your child’s genetic code (DNA), which disrupt normal brain function and development. In some cases, children inherit DEE from healthy parents who have recessive genes. Structural brain malformations, tumours, brain injuries and metabolic conditions can also lead to DEE.

Children with DEEs often have frequent seizures of varying types; however, DEEs involve more than just seizures. Many children with DEEs have difficulties with learning, behaviour, movement, eating, feeding, and sleeping.

Prioritising a faster diagnosis can lead to better health outcomes in the long term.

For further information around DEEs, please visit https://bit.ly/3X7t4Kg or contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

This National Reconciliation Week, we honor our shared past, cultures, and triumphs while embracing the wisdom of the world's oldest living culture. This year's theme, 'Now more than ever', reminds us of our collective journey towards genuine reconciliation.

Epilepsy Australia is committed to supporting Aboriginal and Torres Strait Islander peoples living with epilepsy.

Join us in fostering inclusivity and respect. Learn more at www.reconciliation.org.au

Do you have questions about managing your mental wellbeing while living with epilepsy? The Epilepsy Smart Australia program is here to help.

The program can help you access ongoing information and support to suit your needs. This includes information on:
- Stress and seizures
- Techniques to reduce stress
- Tips for living well with epilepsy
As well as:
- Fact sheets
- Referrals to other services that can help.

Get in touch and become epilepsy smart today. Contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

Do you have questions about seizure monitors and devices? The Epilepsy Smart Australia program is here to help.
The Epilepsy Smart Australia program can help you access ongoing information and support to suit your needs.

This includes:
- Types of seizure monitors available
- Things to consider before purchasing a seizure monitor
As well as:
- Fact sheets
- Referrals to other services that can help

Get in touch and become epilepsy smart today. Visit https://bit.ly/3TW0wA0 or contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only

Experience a new way of learning with our Epilepsy Smart Learning platform.

Gain the knowledge and skills to become epilepsy smart and provide the safest environment possible for people in your school or organisation.

Our new platform offers:
- Fast, easy and flexible interactive learning
- The most up-to-date information
- Content developed by epilepsy experts
- Enhanced access to reporting.

Become epilepsy smart today. Register for a course at www.epilepsysmartlearning.org.au or contact the National Epilepsy Support Service on 1300 761 487 or [email protected] for further information.
Face-to-face meetings are by appointment only.

Do you have questions about sleep and epilepsy? The Epilepsy Smart Australia program is here to help.

The Epilepsy Smart Australia program can help you access ongoing information and support to suit your needs.

This includes information on:
- Sleep and seizures
- Things that can affect sleep
- Sleep disorders and epilepsy
- Tips for getting a good night's sleep
As well as:
- Fact sheets
- Referrals to other services that can help

Get in touch and become epilepsy smart today. Visit https://bit.ly/43SbhrC or contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

If someone experienced a seizure in your care, would you be expected to administer medication?

Any person with epilepsy in your organisation, whether it be a school or other workplace, should have a current and easily accessible Epilepsy Management Plan (EMP) in place, and if prescribed by their treating doctor, an Emergency Medication Management Plan (EMMP). In order to be able to safely and competently support the person with epilepsy while they are having a seizure, including administering any emergency medication, if required, it is vital that anyone with a duty of care be properly trained in how to do so, in accordance with the person’s individual plans.

Ensuring your organisation has plans in place for any person with epilepsy is an important aspect of providing a safe environment, followed by ensuring you have undertaken the necessary training in accordance with that person’s plan. EMPs are usually developed by the individual or their parent/carer in conjunction with the treating doctor, but may also be done with the assistance of someone within the organisation, such as a school nurse.

Become epilepsy smart today. Register for a course at www.epilepsysmartlearning.org.au or contact the National Epilepsy Support Service on 1300 761 487 or [email protected] for further information.
Face-to-face meetings are by appointment only.

During his visit to Australia, UCB CEO Jean Christophe Tellier met with families whose children experience complex childhood epilepsy. These families shared their personal stories, discussed challenges they face, and highlighted the significance of faster treatments for their loved ones.

The aim of the discussion was to support UCB's awareness and engagement campaign with relevant stakeholders such as federal MPs and senators, which seeks to explore pathways to expedite and ensure fair access to innovative patient treatments through the Pharmaceutical Benefits Scheme (PBS).

In attendance, representing the Epilepsy Smart Australia team, was Epilepsy ACT CEO, Fiona Allardyce.

If you are in need of support with epilepsy, please visit www.epilepsysmart.org.au or reach out to the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

The 'Parents of children with rare and genetic epilepsy' peer-led support group is tailored for parents who are navigating the journey for children diagnosed with rare and genetic epilepsy. It's a community where parents, regardless of their background, can find solace, share their experiences, and offer each other invaluable support. This group understands the distinctive and often complex journey that comes with rare genetic epilepsy, and it is committed to providing a space where parents can connect, exchange insights, and find comfort in knowing they are not alone in their journey.

Facilitated by a peer with lived experience, this group is self-directed and self-empowered to come together and share in a way that works best for the members. How and when the group meets will be directed by the members.

Learn more about the Peer-led Support program and join today by visiting epilepsysmart.org.au/peer-led-support-groups or contacting the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

Epilepsy Smart Australia is the national collaboration of six epilepsy service providers from every state and territory in Australia. Our collective organisations are working together to provide the highest possible standard of education and training to individuals, schools and organisations around the country.

In short, we are the experts in the field of epilepsy education and have pooled our resources, knowledge and skills to provide quality training programs.

Our trainers bring a wealth of experience with backgrounds and qualifications in nursing, direct care, disability and education. All of our trainers hold a Certificate IV in Training and Assessment. While our training programs are developed nationally and based on current best practice, training is delivered by experts in the sector on a state-by-state basis, so you are provided the best training possible to apply in your state of residence.

Become epilepsy smart today. Register for a course at www.epilepsysmartlearning.org.au or contact the National Epilepsy Support Service on 1300 761 487 or [email protected] for further information.
Face-to-face meetings are by appointment only.

Why should you choose Epilepsy Smart Learning?

Epilepsy Smart training programs have been developed with the collective knowledge of a range of experts nationally who are leaders in the sector, making us the leading provider of high-quality epilepsy training in Australia.

We ensure ongoing best practice information is provided to learners through modules developed by subject matter experts, with content based on the latest knowledge in the epilepsy sector. This knowledge is translated into easy-learning modules that are up-to-date, engaging and easy to understand, enhancing learning and retention of information.

Become epilepsy smart today. Register for a course at www.epilepsysmartlearning.org.au or contact the National Epilepsy Support Service on 1300 761 487 or [email protected] for further information.
Face-to-face meetings are by appointment only.

The 'Parents, carers and partners of people living with epilepsy' peer-led support group is tailored to parents, carers (including extended family members), and partners of those impacted by epilepsy. It is a community where members can share their experiences, ask questions and offer each other invaluable support.

This group understands the distinctive, unpredictable and often challenging nature of supporting a child, young adult or adult living with epilepsy, and is committed to providing an inclusive and welcome space where members can find comfort in knowing they are not alone in their journey.

Facilitated by a peer with lived experience, this group is self-directed and self-empowered to come together and share in a way that works best for the members. How and when the group meets is directed by the members, and includes opportunities to connect via chat and virtual meetups.

Learn more about the Peer-led Support program and join today by visiting epilepsysmart.org.au/peer-led-support-groups or contacting the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

Recently, the Epilepsy Smart Australia program was nominated in the Best Not for Profit Project category at the iTnews Benchmark Awards.

The awards acknowledge the work of IT leaders and teams and give them the opportunity to gain recognition for their ambition, innovation and the value they deliver to government, industry and the public.

An awards dinner was hosted in New South Wales earlier this month, where project leader and Epilepsy Foundation Chief Information Officer, Sharmila Lakshmanan was in attendance with Epilepsy ACT CEO, Fiona Allardyce, and Epilepsy Queensland CEO, Chris Dougherty.

While the program did not take home the top award, we feel extremely proud of this achievement, and would like to thank all partners and staff for their collaborative effort.

"Six epilepsy service providers have come together with the one purpose of improving the lives of people living with epilepsy through technology and innovation, so that they can have consistent support and services available. An award like this is very humbling, and this project is a testament that we can work with industry leaders across all states and territories to achieve a positive outcome." - Sharmila Lakshmanan

Visit www.epilepsysmart.org.au to learn more about the Epilepsy Smart Australia program and how it supports people living with epilepsy.

Why is education and training in understanding and managing epilepsy so important?

There are more than 60 different types of seizures and everyone’s experience with epilepsy is different. Anyone of any age can experiences a seizure at any time – a seizure can happen at work, at home, at school or out in the community. Knowing how to recognise when someone is having a seizure and what to do, is vital to be able to assist and care for the person, to ensure their safety and minimise the risk of injury or worse.

Through education and training, we aim to equip you to better understand and support the needs of people living with epilepsy and ensure a safe environment, no matter where you are. This is all part of our aim to create an Epilepsy Smart Australia.

Become epilepsy smart today. Register for a course at www.epilepsysmartlearning.org.au or contact the National Epilepsy Support Service on 1300 761 487 or [email protected] for further information.
Face-to-face meetings are by appointment only.