Message from our CEO, Carol Ireland
To our Community,
We would like to acknowledge the significant impact the Coronavirus (COVID-19) is having on communities and individuals across the Australia and the world. As this crisis continues to infiltrate our lives daily, I hope that you, your family, friends and colleagues are safe and well, and are taking the necessary precautions to keep it that way.
The impact of this virus is widespread and whilst there are lots of unknowns right now, particularly as the situation changes by the hour, Epilepsy Action Australia’s focus is on two things:
- Continuing to support you, our clients, in every way we can
- Ensuring the well-being of our staff
Firstly let me say, during this period of crisis, it is important you always rely on facts; we will try to keep you up to date as best we can by posting on our Social Media channels and website regularly with reliable information from the health authorities. Another good source of information is the Australian Government’s Department of Health website.
As an organisation, Epilepsy Action Australia has decided to have all employees work remotely from their homes commencing 23 March, for an unknown period. We have made this decision for the benefit of their well-being and safety. Rest assured, we have taken great measures to ensure that we will continue to provide the resources and support to our community and are extremely confident that our organisation continues to be here for you during this time. Our nurses are also fully prepared to ensure they are as accessible to people living with epilepsy or impacted by it, as they would be if they were in the office.
The Epilepsy Nurse Line is still available at this time for support and will continue to be staffed. But we do ask for your patience as we are experiencing extreme volumes in phone calls at present. As a result there may be a reduction in operating hours including weekend availability. We do apologise for this.
Considering the evolving situation regarding Coronavirus (COVID-19), EAA have ceased face to face professional epilepsy training until further notification. This temporary changeover has been implemented in the best interest of our internal and external stakeholders. Please note we will be still providing Epilepsy trainings via our online modules or via webinar. For further information, please contact our education team on 1300 37 45 37 option 2 or email at [email protected] We apologise for an inconvenience and thank you for your understanding.
As you know, March 26th is Purple Day, and the entire month is dedicated to raising much needed awareness of epilepsy on a global scale. Obviously, these efforts have been impacted greatly by the current crisis. Many of our planned activities for Purple Day including lighting up the Opera House Sails, Bunnings Sausage Sizzles, Merchandise stalls etc have had to be cancelled or postponed to 2021. We realise how disappointing this is, especially for those in our community who had planned to run their own Purple Day event, but we want to ensure the safety of everyone first and foremost. We can continue to celebrate Purple Day and raise funds but this year we are going to have to think of some new ways to do so. We have some wonderful ideas being updated regularly on our Facebook page here or you can still buy your purple merchandise or make a donation. Every little bit counts!
Please know that we are as devoted and committed to supporting you through this crisis as we are at all other times. If you need more assistance, feel free to call our Epilepsy Nurse Line on 1300 37 45 37 or email us at [email protected]
In these uncertain times the best we can do is avoid panicking, follow the official health advice, and monitor government updates. On a personal note, I do hope that you and your loved ones stay safe and well in the coming months as we ride this out. Thank you for your understanding during this very difficult time, and we appreciate your patience.
Chief Executive Officer & Managing Director
Epilepsy Action Australia
Questions about Epilepsy & COVID-19
We have been receiving some questions from our community about what COVID-19 means for people with epilepsy. Below, we answer just some of these questions.
For more information and practical steps on our website, click here.
Further information and trusted advice can be sourced on the Australian Government’s Department of Health website.
If you have questions not answered here, please feel free to contact our:
National Epilepsy Line on 1300 37 45 37 or email [email protected]
Q: Are people with epilepsy more likely to get COVID-19?
A: Those living with epilepsy are not more at risk to contract coronavirus, nor should it increase COVID-19’s severity or impact on you. Still, we do recognise that respiratory and fever symptoms could trigger seizures in some people with epilepsy and have a bigger impact on people who have a coexisting or complex medical condition.
One point to note however, some medicines infrequently used to control seizures, may affect your immune system. These are medications used in a minority of people with epilepsy who require treatment with immunotherapies such as adrenocorticotropic hormone (ACTH), corticosteroids (dexamethasone, hydrocortisone, prednisone/prednisolone, and methylprednisolone) or intravenous immunoglobulin (IVIG). You will need to take additional precautions if you or your child is taking these medications and should discuss this further with your general practitioner (GP).
It is also vital to practice social distancing in order to slow the spread of coronavirus, as not doing so will result in overrun hospitals with less resources to help people with any illness.
Q: Can COVID-19 increase seizures in a person living with epilepsy?
A: Coronavirus symptoms can range from mild illness to pneumonia. Some people will recover easily, and others may get very sick very quickly. During this illness, the body will be under physical and emotional stress.
Seizure triggers differ for everyone, but some symptoms of COVID-19, particularly a fever, may affect some people and possibly cause or increase seizures, as will being extremely unwell. If you become unwell, try and maintain healthy eating and keep your fluids up by drinking regularly. If your seizures worsen and you are concerned, contact your doctor.
Q: What should I do if I notice a difference in my seizures?
A: Contact your epilepsy health care provider (neurologist), as well as your GP, if you believe you may have contracted COVID-19. Some tips for getting in touch with health care providers during this time:
- Call first so that they can take relevant steps to ensuring more people aren’t at risk at catching COVID-19 at their facilities.
- Only go to the emergency room if it is an emergency. Hospitals are quite overrun right now with COVID-19 cases.
- If you have been prescribed a seizure rescue medication, ask your GP or pharmacist about obtaining more supplies.
For more information you may wish to contact the National Coronavirus Helpline on 1800 020 080
Q: How can I protect myself from getting COVID-19?
A: These steps below can lessen your chances of catching COVID-19.
- Practice social distancing or voluntary isolation as much as possible.
- Even if you are not showing symptoms you could still have COVID-19 – and be spreading to more vulnerable people as it is highly contagious.
- Practice good hygiene:
- Wash your hands regularly – in particular after returning home after being outside, before and after eating, and after touching surfaces such as door handles, stairwell rails, shopping trolleys and petrol pumps.
- Avoid close contact with people who are sick.
- Avoid touching your eyes, nose and mouth.
- Stay home if you are sick and call your health care provider first if you need an appointment.
- Wear a mask, especially if you are sick, when in public.
- Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
Worried about wearing a face mask?
If your seizures are well controlled, you need to stay safe the same ways as for those who do not have epilepsy.
If your seizures are not well controlled, look at your own circumstances and risks, and what you think will work best for you, while staying safe.
A new report published by an international group of epilepsy experts, including Professor Helen Cross*, has examined safety issues around wearing masks for people with epilepsy. The report finds that, “while there is no concrete evidence, wearing a mask may simulate hyperventilation for some people, which in turn may provoke a seizure. However, in the absence of any treatment or vaccine for Covid-19, prevention remains the best strategy and masks are most likely to be effective in helping to prevent the spread of the disease.”
Suggested advice is:
- Whether you need to, or want to wear a mask, try not to wear it for long periods. Have short mask-free breaks in a safe location.
- It is sensible to wear a mask in crowded locations such as public transport and shops where physical distancing is difficult.
- Do not wear a mask while undertaking extensive physical exercise, as long as there is no close contact with others.
- It is considered reasonable to remove a mask from someone having a seizure or recovering from a seizure to help assist breathing.
- Always use other essential safety measures, such as good hand hygiene and physical distancing.
- If you have concerns about wearing a mask, speak to your doctor.
For the full report go to: https://onlinelibrary.wiley.com/doi/full/10.1111/ane.13316
Q: Will the situation with coronavirus lead to shortages of my epilepsy medicine?
A: The TGA has not received any notifications of prescription medicine shortages in Australia as a direct result of COVID-19. Some people may have experienced shortages at their local chemist, but this is related to that chemist. However, it is a good idea to ensure you have at least two weeks supply of medication at home in case you get quarantined. If you are unable to source your medication, speak to your local pharmacist or contact your GP or neurologist to discuss.
Q: What do the new medication supply guidelines mean?
We have had many questions about medication shortages during COVID-19. It has recently been announced that, in order to stop bulk purchases and to ensure everybody has access to their medication, pharmacists will only dispense one-month supply of medication for chronic health conditions and one unit of over-the-counter medications such as Ventolin and paracetamol.
To find out more the best website to refer to for accurate information is here.
Q: What does self-isolate mean?
A: You need to self-isolate in your home (or hotel) if you think you have been in contact with a person infected with COVID-19, or if you arrived from overseas after March 15, even if you’re showing no symptoms. Self-isolation is not the same as social distancing.
If you have to self-isolate, you need to stay at home to reduce the risk of transmission. No public places like work, school, childcare or university, and no public gatherings. Only people who usually live in your household should be in the home, so it’s important you don’t have visitors during the isolation period. If you are in a hotel, you should avoid contact with other guests or staff. If you’re self-isolating but feeling well, there is no need to wear a surgical mask at home.
If you need to leave the house, such as for a medical appointment, wear a mask if you have one to protect others. Where possible, ask friends, family or neighbours who are not in isolation to pick up food and necessities for you, and leave them at your front door.
To lessen the spread of germs (especially if you live with others), you should regularly clean frequently-touched surfaces (like doorknobs) and wash your hands — frequently and thoroughly.
Police have the power to force people to comply with self-isolation, with large fines for people who flout the rules. Elsewhere, self-isolation has helped curb the increase of coronavirus transmission.
Q: My child has epilepsy, should I keep them home from school even though schools remain open at this time?
A: Sending your child to school at this time is a personal choice. In some states, schools are already closing. If you feel that it is safer for your child (and family) to not go to school, then keep your child at home.
Q: How can I talk to my child about COVID-19, they are already scared?
A: This site may help you explain coronavirus to your children https://www.unicef.org.au/blog/news-and-insights/march-2020/how-to-talk-to-your-children-about-coronavirus
Here is also some advice for parents: https://blogs.rch.org.au/neurodevelopment-and-disability/2020/03/20/covid-19-advice-for-parents/
Q: I have an adult child with an intellectual disability. Where can I find easy to read information for him to follow?
A: Good question. It is important everyone understands what to do and what is happening. Your son should find this information much easier to follow:
If you have any other questions regarding COVID-19, you may wish to refer to the FAQ page of the Australian Government’s website here
Tips for coping with coronavirus anxiety https://www.psychology.org.au/getmedia/38073179-4701-48bd-afd9-988c560ee2f9/20APS-IS-COVID-19-P1.pdf
If you are experiencing stress, anxiety or other mental health concerns as a result of the coronavirus, the Head to Health website makes your search easier by hand-picking resources from trusted providers. https://headtohealth.gov.au/
You may also call Beyond Blue 1300 22 4636
You may also call Lifeline 13 11 14
For the latest advice, information and resources, go to www.health.gov.au
Call the National Coronavirus Health Information Line on 1800 020 080. It operates 24 hours a day, seven days a week. If you require translating or interpreting services, call 131 450.
To check your symptoms for coronavirus click the image below to visit the healthdirect resource: