Epilepsy Australia in Melbourne, Victoria, Australia | Non-profit organisation

Epilepsy Australia

Locality: Melbourne, Victoria, Australia

Phone: +61 1300 852 853

Address: 587 Canterbury Road 3127 Melbourne, VIC, Australia

Website: http://www.epilepsyaustralia.net/

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• Non-profit organisation

25.01.2022 Time to get your creative juices flowing! For today's #MakeMarchPurple celebration, we're looking for the best purple paintings, drawings and artwork from our wonderful community! So crack out the paintbrush and a canvas and show us what you can do. Don't forget to tag your creations with the #MakeMarchPurple and #PurpleDay hashtags -- our favourites will be featured on our social pages.

24.01.2022 Macquarie University is running a free Wellbeing Neuro Course for people with epilepsy. Learn more about it and the current clinical trial at the Macquarie University eCentreClinic

23.01.2022 Here's an important message from Epilepsy WA about staying well during these difficult times.

22.01.2022 What has been your experience with testing and diagnosis? A new study from Monash University has uncovered how technology could help automate a person’s epilepsy diagnosis. Researchers are working with The Royal Melbourne Hospital and The Alfred Health to develop an algorithm that can automatically detect signs of epilepsy. This machine uses data from over 400 EEG recordings, and will hopefully provide epilepsy patients with a faster diagnosis. This is excellent news for pe...ople living with epilepsy, as the current process to diagnose epilepsy is often a lengthy one. This can be debilitating and frustrating for those living with epilepsy and can make it harder to receive an accurate diagnosis. Let us know what your experience with diagnosis has been in the comments below.

22.01.2022 Do you experience focal awareness seizures? In some cases, this type of seizure comes before another seizure type, such as a tonic-clonic seizure. This sensation, which typically indicates a larger seizure is going to happen, is sometimes called an ‘aura’, although it is actually part of the seizure.

22.01.2022 Did you know that people with epilepsy are often at a higher risk of developing memory problems? This can be a side effect of seizures, surgery and AEDs, or can be caused by low mood, tiredness and stress. Memory issues can be frustrating, so we wanted to share some tips below. What have you found helps your memory?

22.01.2022 How have you been coping throughout the COVID-19 pandemic? The International Bureau for Epilepsy has put together an article on surviving the pandemic from a p...sychological perspective, with tips tailored to people living with epilepsy. It's normal to feel a loss of routine and control, increased anxiety and reduced support structures during this time. There are simple things you can do to lessen the impact of these changes and improve your health and wellbeing, including: - Sharing your thoughts and fears with a family member or friend. - Seeking information on COVID-19 not more than once or twice per day, and always from trusted sources. - Keep in contact with loved ones and utilise helplines and forums for people with epilepsy. - Make sure you have at least two weeks' supply of medication and learn simple daily exercises to perform at home. - Focus on ways to manage relationships with your family at home, including taking turns in working spaces and putting difficult decisions or conversations on hold. - Keep regular routines, or help create new ones for the new environment.

21.01.2022 Take a look at this webinar from the Epilepsy Foundation, featuring social media and communications staff member Emma Gaffy. She talks about her journey with pregnancy while living with epilepsy.

21.01.2022 Do you experience anxiety related to epilepsy? According to Beyond Blue , around 20% of people experience generalised anxiety disorder. For people living with epilepsy, anxiety might arise due to the stress of living with a chronic health condition, and this is often related to the unpredictable nature of seizures and the worry about when another one might occur. Anxiety can also develop as a result of feeling socially isolated, experiencing stigma, or AEDs. If you’re feeling anxious, it’s important to remember that help is available. Speak to a close friend, get in touch with your doctor and document what is triggering your anxiety.

21.01.2022 We're almost at the finish line! To celebrate the end of #MakeMarchPurpleforEpilepsy, why not take to the streets in your finest purple gear? Run, walk, swim or cycle in your best purple outfit to help us shine a light on epilepsy in Australia. If you snap a pic on your outing, share it with your friendsand don't forget to tag us!

21.01.2022 Excellent news from our friends at Seer Medical - the Federal Government will provide $1 million to Seer for its project developing a real-time seizure forecast...ing system! The project, which uses mobile phones and smart wearables, has the potential to greatly improve the lives of people living with epilepsy and even save lives. See more

21.01.2022 Epilepsy Australia President Wendy Groot spoke to Teacher Magazine about supporting students with epilepsy, including the kind of changes teachers can make in the classroom to ensure no student living with epilepsy is left behind. "With proper teacher education and training, and a few simple concessions, the student is usually able to participate fully in all that school life has to offer, creating a much happier and inclusive experience for the child," Ms Groot said.

19.01.2022 Have you picked up some purple merchandise this year? Show us what you've got in the comments below! Order your own here: http://makemarchpurple.org.au/shop/

19.01.2022 How do you feel after a seizure? In the final post-ictal stage, people begin to feel the physical after-effects of the seizure and will often need time to recover. This recovery will vary depending on the part of the brain involved, and the length of the seizure. Knowing this information is important when supporting someone with epilepsy. Do you know how to help someone after a seizure?

19.01.2022 Are you interested in joining Australia's most extensive MC observational study? ACR has launched the CMOS, which will assess medicinal cannabis use for people living with epilepsy. The clinical trial will work with 20,000 people over the next five years and could be a pathway for providing medical cannabis access. While it's shown promising effects, there is currently insufficient evidence for cannabis to be prescribed as a regular treatment for epilepsy. This study is an important part of this process to understand how cannabis may be helpful in the treatment of epilepsy. If you'd like to get involved, visit https://appliedcannabisresearch.com.au/cmos-study/

16.01.2022 How has living with epilepsy impacted your quality of life? Researchers from the Australian Centre for Health Services Innovation at the QUT (Queensland Univer...sity of Technology) are researching this important topic, including the effects of COVID19 on employment opportunities. They are currently looking for participants to join this critical research study - more info can be found below. If you’d like to get involved, it involves completing an online questionnaire taking less than 10 minutes. Click on the link to find out more: https://redcap.ihbi.qut.edu.au/surveys/?s=L4DPH7KYYJ

15.01.2022 The Australian Epilepsy Project, which is seeking to revolutionise the treatment of epilepsy in Australia, featured on ABC's 7.30 last night! Advocates working to make the Project a reality were featured in a story at the end of last night's program. You can view the story on the 7.30 website here:

15.01.2022 It’s important to be aware of the quantity of alcohol you drink, as alcohol and AEDs interact in specific ways. Antiepileptic medications can make you more sensitive to the sedating effects of alcohol, while alcohol reduces the effectiveness of AEDs. This can make the chance of having seizures more likely. Excessive drinking can also result in poor seizure control due to late nights, missed meals, or forgotten doses, while 'hangover' seizures are likely to occur as the alc...ohol level in the blood falls. Although most people with epilepsy can drink a moderate amount of alcohol, some people find that even small amounts of alcohol can trigger seizures. Ask your doctor about the effects of drinking alcohol with the medication you have been prescribed.

15.01.2022 Aaron’s story. I’m 22 years old, and when I was about 16, I started having these auras. It felt like deja vu, where I’d get a metallic taste in my mouth, couldn’t feel my body, stopped communicating and I didn’t know where I was. These would last about a minute, but I didn’t think much of it until one day in 2016, I had my first seizure. It happened just after I finished high school. One day, I woke up after a nap, started to walk towards the kitchen then blacked out and wo...ke up to paramedics around me. My body ached and I had no idea what happened; so I was taken up to the hospital to be monitored. The doctors said everything was normal, that I had no family history of epilepsy and the neurologist started me on medication just as a precaution and discharged me. A few months passed, and although I have absences seizure every couple of months, my doctor thinks it could just be stress and everything should be okay. My neurologist decides to switch my medication to a higher dosage, and I started to experience seizures less frequently. About two years later, I have a tonic-clonic seizure in my sleep, and my partner calls the ambulance to take me to the hospital. All my results are normal, and the doctors aren’t sure what to do. A few months go past, and the seizures start coming more frequently but always in my sleep and never while I’m awake. They could happen once a month or once every six months; they were all over the place. When they would happen, my partner would wake up to the sound of my choking and going purple in the face. It was terrifying for her. These seizures would last about one minute, and they were happening every month. We couldn’t understand what was triggering them; there was no stress in my life, we had a beautiful baby boy, and things were great. Then it got to the stage of having one every week and being at the hospital frequently, and there was still no diagnosis. It was incredibly frustrating. To read more of Aaron's story, head to comments.

14.01.2022 There's #MakeMarchPurple inspiration just about everywhere you look! If you're out and about, keep an eye out for a splash of purple to share with the world. Show us your best #MakeMarchPurple finds below

14.01.2022 Did you know that 1 in 25 Australians will be diagnosed with epilepsy at some point in their lifetime? Epilepsy simply means that a person has shown a tendency to have recurring seizures. Just because a person has a single seizure does not necessarily mean that they have epilepsy. It is estimated that approximately 50% of people who have one seizure go on to have more seizures. If you experience a seizure, it’s important to seek medical attention. Check out our website at http://www.epilepsyaustralia.net/ for more information.

14.01.2022 Do you experience focal impaired awareness seizures? Epilepsy Queensland Inc. has shared this resource, which outlines five facts about this seizure type. Previously called complex partial, these seizures begin in one area of the brain and can sometimes look like either daydreaming or absence seizures. There are a few key differences - learn more by visiting our website.

14.01.2022 Have any plans for tonight? Now you do! We're rolling out the next instalment of our Living with Epilepsy webinar series: Epilepsy and Pregnancy with Emma Gaffy.... Emma will discuss her experience going through pregnancy while living with epilepsy, including lifestyle and health implications, pain and sleep management and more. The webinar will be streamed live on our Facebook page and our website at 6pm AEST--look out for a post from 5:30pm to tune in. See you then!

13.01.2022 Looking for a way to show off your support for #MakeMarchPurple? Add one of our profile photo frames to your Facebook picture and do it with style. Simply click 'Try It' below to add it to your picture!

13.01.2022 Do you know what typically triggers your seizures? Every person responds differently to different triggers, and has a different seizure threshold. It's a good idea to keep a seizure diary, and track what happens before a seizure. The Epilepsy Foundation of Australia have created this handy resource of common seizure triggers. Let us know below - what is a trigger you try to avoid?

12.01.2022 Join us for an around-the-country look at all things Purple Day! All across Australia, epilepsy advocates and organisations are working to raise awareness and funds to support people living with epilepsy. Whether it's a bake sale, a social media challenge, or a fun run, every contribution counts. Tune in as we celebrate the tireless work of people around the country to Make March Purple!

12.01.2022 Witnessing your first seizure can be a daunting experience, but knowing what to doand what not to dois crucial. This brief overview will provide you with some of the basics of seizure first aid. For a more detailed approach, consider signing up for a seizure first aid course. You can learn more here: http://www.epilepsyaustralia.net/epilepsy-training/

10.01.2022 A reminder that the Genetic Epilepsy Conference 2020 is happening THIS SATURDAY, May 30. You can tune in online to hear from world-leading epilepsy experts on developments in research and treatment.

10.01.2022 Do you know the requirements for driving with epilepsy? You may be able to hold a drivers licence as long as your seizures are well controlled, and if you follow national driving guidelines. To get your licence, you must follow these regulations: - You must be seizure-free for a specified amount of time (depending on your state’s guidelines) - You must continue to take your prescribed AEDs regularly - You should not drive if sleep-deprived or under the influence of alcoho...l and other drugs People who’ve had a seizure are required by law to notify the licensing body in their state or territory and stop driving until a medical report is supplied. Most people can return safely to driving once their seizures are under control, but the length of time a person must wait varies depending on their epilepsy type.

10.01.2022 We're saying farewell to Epilepsy Queensland CEO Helen Whitehead after an amazing 28 years in the role. Click through to read a wonderful tribute to her outstanding service to Queensland--including photos with some Aussie greats!

08.01.2022 Have you pledged your support for the Australian Epilepsy Project yet? This ambitious bid for up to $100 million in federal health funding could completely revolutionise the lives of people living with epilepsy. It connects patients, clinicians, med-tech professionals and more, bringing a world without seizures within reach. Visit the Australian Epilepsy Project website today and show your support: https://epilepsyproject.org.au/

05.01.2022 Did you know that the chance of being diagnosed with epilepsy increases dramatically with age? Although epilepsy can develop at any age, those over 65 are more typically vulnerable to developing epilepsy. If you have developed epilepsy later in life, rest assured that there are services and information available to support you. Check out our website to find out more: http://www.epilepsyaustralia.net/resources/

04.01.2022 ! Thank you to everyone who entered our competition! We loved how you embraced the social distancing challenge and STILL raised awareness, funds and support for people living with epilepsy!... Congratulations to our winner! ! , ' ! #GoPurpleForEpilepsy #PurpleMonth2020 #PurpleDay

04.01.2022 Get ready to Make March Purple for Epilepsy! In 2021, we're making Purple Day bigger and better than ever before, teaming up with our interstate colleagues for a nationwide awareness campaign. All throughout March, we'll be offering inspirational stories, fundraising ideas and helpful information to make this Purple Day the best one yet. All of this will culminate in an around-the-country LIVESTREAM EVENT on Facebook, Twitter, YouTube and our website on March 26, giving you a...n opportunity to join in the fun no matter where you are. So crack out the purple nail polish and get your hashtags ready -- let's #MakeMarchPurple!

03.01.2022 Did you know that stress is one of the most common triggers for those who have epilepsy? For many people, COVID-19 has increased their feelings of stress and anxiety. Although stressors are an unavoidable part of life, there are many ways to reduce their impact on well-being We’ve shared a few of our tips below.

03.01.2022 Are you an epilepsy nurse working in Australia? Macquarie University is seeking participants for a collaborative study exploring the roles and responsibilities of nurses in the management of epilepsy across primary and community care settings. This study aims to explore and clarify the work of epilepsy nurses across primary and community care settings, e.g., in treating and managing epilepsy, connecting people to services, and providing information and support to in...dividuals and families. Participation in this study will involve a one-hour interview with a study researcher, and the option of participating another interview or a small focus group at a later date. Participation in this research is completely voluntary and confidentiality is guaranteed. If you are interested in finding out more about participating in this study please email [email protected] or ring Dr Karen Hutchinson (02) 9850 2451.

03.01.2022 Have you got a special dog in your life? Researchers believe seizure alert and response dogs might be able to detect changes in scent through sweat or other signs, such as slight involuntary twitches. Rheana, who works as a National Epilepsy Support Service Coordinator at our affiliate organisation the Epilepsy Foundation of Australia, has shared exactly how life-changing seizure alert dogs can be. Her son, who lives with epilepsy, was lucky enough to have an assistance dog f...or nearly 8 years. "It changed his life immensely," says Rheana, "She actually saved his life on a number of occasions." Sadly, current data suggest that seizure dogs only work for about 40% of people. To combat this, Rheana wants more evidence-based information and research done on larger cohorts." To read more of the ABC News story, visit the link below.

02.01.2022 Vale Jack Cameron and Archie Gouldson We are devastated to hear about the passing of 10-year-old Jack Cameron of Ardno, Mount Abundance, and 16-year-old Archi...e Gouldson of Brisbane, in a tragic car accident near Roma this week. The Cameron family are members of the Epilepsy Queensland community, and we would like to extend our heartfelt condolences to parents Nick and Sarah, and sisters Georgia, Jemma and Meg. This tragic loss is being felt throughout the Roma community and beyond, and we offer deepest sympathies to everyone touched by Jack's life. A Cameron family spokesperson said Jack was "a talented junior rugby league player and a true country boy." The Cameron family say they have been overwhelmed by the support from the local community, family and friends. They have set up a fundraising page called Jack's Last Gift where friends can donate to Epilepsy Queensland, a cause close to their hearts, in lieu of flowers and gifts. "Epilepsy is a condition that has severely impacted Jack's family in recent years and the Camerons hope those who want to show their support will do so by visiting Jack's Last Gift and donating a little," the family spokesperson said. Our organisation is deeply grateful to be the beneficiary of Jack's legacy through the Everyday Hero page: https://epilepsyinmemoriam.everydayhero.com//jacks-last-gi

02.01.2022 Harry's Story. For Mick and Kerry, the speed at which their son’s epilepsy progressed from mild to severe will haunt them forever. Harry, aged just 19, died as a result of a nocturnal tonic-clonic seizure, only four months after he had started having seizures. Harry was a healthy, typical 19-year-old. He was working and playing football for St Bernard’s in the Victorian Amateur Football Association, which is why it was such a shock when he died suddenly, says Mick.... Harry started having absence seizures at just 19, says Mick. At the start, they were mild, but they progressed in severity very quickly, within a matter of months. Then one night, he had a major tonic-clonic seizure, and we had to take him to the hospital. Then early one morning, just four months after his first seizure, he came home from work around 4.00 am. Sometime between then and 8.00 am he had a severe seizure, and he was gone. He had an appointment scheduled for that morning to hear his diagnosis, but it was too late. Following Harry’s death, the Overmans have been frustrated that the Coroner would not make a finding of SUDEP. He would not say that Harry died from his epilepsy, as he had not yet been diagnosed. So SUDEP is not the reason given on his death certificate, but we know in our hearts that that’s what it was. Kerry wants to get the message out that it’s crucial to get diagnosed as quickly as possible. We thought we had time, but we didn’t. It was four months from when he started having seizures to when he died. We never knew that death was a possibility or that epilepsy could be life-threatening. Mick and Kerry have reached out to the Epilepsy Foundation since Harry’s death and have attended the organisation’s memorial services, for families and friends who’ve lost loved ones to epilepsy. We’ve all had to deal with the grief, says Kerry. The Foundation’s services have helped us realise we are not the only ones who’ve lost someone to epilepsy.

01.01.2022 There are so many ways you can #MakeMarchPurplewhich will you choose? This March, epilepsy organisations across the country are coming together to shine a light on epilepsy in Australia. From community fundraising to awareness-building, we'll be providing dozens of ways to get involved. We've just launched two profile frames, too search for "Make March Purple" to get yours!... Together, we can make a real difference to the lives of people with epilepsy. Find out more at makemarchpurple.org.au.