Epilepsy Queensland Inc. in Woolloongabba | Social service

Epilepsy Queensland Inc.

Locality: Woolloongabba

Phone: +61 7 3435 5000

Address: Level 2, Gabba Towers, 411 Vulture Street 4102 Woolloongabba, QLD, Australia

Website: http://www.epilepsyqueensland.com.au

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• Non-profit organisation
• Disability service
• Social service

25.01.2022 Do you live in Queensland? Would you like to share your experience of living with epilepsy with dance theatre artist Ruby Donohoe? Ruby, who was diagnosed with epilepsy at 14 years of age, is writing a new performance about her experiences and is looking for 6 -10 people to talk about "What is an 'out-of-body experience?" Ruby shares: "Epilepsy has taught me a lot. Sometimes I feel like the more I get to know my body, the more mysterious it is to me. My body is both my close...st companion and completely unknowable. For a while - and if I'm honest sometimes still- I feel betrayed by my body for being so sensitive but my sensitivity has also become the thing I love most about myself." Interviews (in-person or via Zoom) will be 30 minutes to 1 hour long. Go to www.rubydonohoe.com/research to sign-up or to find out more. This project is supported by the Queensland Government through Arts Queensland. Disclaimer: Epilepsy Queensland is not affiliated with this project and representations of epilepsy in this creative project do not necessarily represent the views of Epilepsy Queensland.

25.01.2022 Powering- Up for Purple Day Recently St Flannan's Primary School Zillmere student Mia, and Mum, Shannon organised a purple dress day with yummy cupcakes. Their efforts raised $488.10 generously donated to Epilepsy Queensland Thank you very much! Purple Day, which is our major awareness and fundraising day for epilepsy, was severely impacted by COVID-19 this year. It is so heartwarming that our community has overcome obstacles to continue to show their support. Would y...our school or organisation like to be involved in Purple Day 2021? Save the date and register your school to participate today! The first 20 schools to register their Purple Day event will receive a free Purple Day Power Pack with Shoelaces, Wristbands, Stickers, Balloons and Posters to boost their fundraising efforts. We would love for every school to know and understand more about epilepsy so that every child that lives with epilepsy can feel safe and included. On average we have 30 early learning, primary and high schools across Queensland collectively raise more than $7,500 to help ensure our Epilepsy Helpline is available to families when they need it the most. Our goal this year is to double that amount to $15,000. With your support we know we can do it! For more info and FREE resources http://bit.ly/PurpleSchools

25.01.2022 Do you know the basic first aid steps for a generalised tonic-clonic seizure? This #SeizureSmartSeptember is a good time to learn! Study hard, as there will be a quiz to conclude our campaign. Please SHARE with loved ones, family and friends to help educate as many people as possible.... For more information or to download seizure first-aid resources: http://bit.ly/EpiFirstAidResources

25.01.2022 Abigail and her family’s epilepsy story is one of bravery Abi received a diagnosis of multifocal epilepsy at just 20 months of age. Mum Danica says The day she was diagnosed was a mixture of relief, guilt and heartbreak. I was glad to have a name for what was happening but at the same time questioning whether we did something wrong to cause this and wondering how her future would look. We mourned the loss of a normal childhood for her. Our family needed support, so I pho...ned the Epilepsy Queensland Helpline People who call the Epilepsy Queensland Helpline are looked after by our caring and knowledgeable team members who are specifically trained in epilepsy management and are there to provide understanding, information and support when it is needed most. Having someone to talk to who has had firsthand experience and deals with epilepsy all the time has been amazing and so beneficial to our family," says Danica. Will you donate today to help ensure newly diagnosed children and adults have access to the Epilepsy Queensland Helpline? Tap http://bit.ly/eqdonate

24.01.2022 Would you know what to do if your child or a child under your care has a seizure? 1 in 20 children will have a seizure at some point in their childhood. This #SeizureSmartSeptember we are aiming to equip as many people as possible with the know-how of seizure first aid. Seizure first aid is simple and saves lives! ... Epilepsy Queensland offers training for people with epilepsy, their families, support workers, schools, organisations and workplaces. We have face to face training options and webinars available that give a comprehensive understanding of epilepsy, how to recognise seizures, seizure first aid and the administration of emergency medication. Visit http://bit.ly/EpilepsyF2FTraining. Let's end seizure stigma and empower people to learn about seizures and seizure first aid.

24.01.2022 Do you know how to respond if someone is experiencing an absence seizure? Absence seizures cause loss of awareness and responsiveness for a brief period. The person may stare vacantly or the eyes may drift upwards and flicker. Sometimes this is mistaken for daydreaming or inattention. To help:... Recognise the seizure has occurred Reassure & re-orientate to environment Repeat any information or instructions that may have been missed Stay with them until fully recovered Providing an appropriate first aid response for a seizure not only can reduce the risk of harm to the person, but also goes a long way toward ensuring the person who has experienced the seizure feels supported and cared for. Do you agree? #SeizureSmartSeptember

24.01.2022 Can you believe tomorrow is December?? Here's hoping the holiday season brings some joy to all in a tough year. @mymigrainestory (IG)

23.01.2022 Purple rain, purple rain It's Spring and it is raining purple as jacarandas shed their petals. With purple being the colour for epilepsy we couldn't resist these blooms snapped near our office. We'd love to see your photos of the streets turning purple near you or share if you love jacarandas or have another favourite purple flower.

23.01.2022 Can you relate to this? Sending a virtual hug to all the loved ones of people living with epilepsy who may need it today.

22.01.2022 It's crunchtime for #1in10 heroes Kat and Warner from Thornlands! SuperMum Kat is doing 10 sets of 10 crunches to raise funds and awareness as part of our October #1in10challenge. This is to help raise vital funds and awareness of seizures and seizure first aid for #SeizureSmartSeptember. Kat's little boy Warner, who is five years old, is one of the 1 in 10 people who will experience a seizure in their lifetime.... You can support Warner and Kat's efforts here: http://bit.ly/Warner1in10 Want to join in? It's easy! For ten days from 1 Oct until 10 October, do something each day related to the number 10- it could be as simple as taking 10 000 steps, cycling 10 kilometres or undertake your own personal 1 in 10 challenge! Register now: https://bit.ly/1in10challenge

21.01.2022 myepilepsywarrior- Kaitlyns story Kaitlyn is six years old and was diagnosed with epilepsy in December 2019. She has grey matter heterotopia, which is where cortical cells (grey matter) are present in the wrong locations in the brain. Devoted Mum, Wen, says Kaitlyn experienced a sudden onset of stroke-like symptoms 12 months ago, with high temperatures for two days. She had left-sided mouth and eye drooping, wasnt able to talk or move, and was awake but as Wen describes... completely out of it. Wen says this event lasted about four hours with small seizures in-between involving eye rolling. Kaitlyn also experienced vomiting and subsequently experienced loss of memory for about six weeks. Now, Kaitlyn still has absence, myoclonic and sometimes complex partial (focal) seizures. Her memory remains affected and she still experiences weakness on her left side. Unfortunately, despite trialling anti-seizure medication Keppra, the side effects for Kaitlyn were extreme including increased aggression and violent behaviour. Wen is hopeful at their next visit to the paediatrician in October another course of treatment will be determined that they can try. Kaitlyns story highlights that a person can experience more than one type of seizure. To learn more about different seizure types this #SeizureSmartSeptember please visit: https://bit.ly/TypesofSeizure We wish you all the best Wen and Kaitlyn. Thank you Wen for sharing a bit about your epilepsy warriors story. If you can relate to this story, we encourage you to leave a message of support below.

21.01.2022 Is there someone who has been there for you that deserves a shout out? Today is #WorldGratitudeDay and we love this beautiful quote. We are grateful today, and every day, to all our supporters and members of our community for sharing and engaging on this platform to raise community awareness and promote better understanding of epilepsy. Thank you for being here. Who (or what) are you grateful for?

21.01.2022 Ryens epilepsy story Ryen was diagnosed with epilepsy at 20 years of age in 2015 after she experienced a fall and hit her head. At the time, Ryen was struggling in hospital with a diagnosis of anorexia and a combination of malnutrition and dehydration caused the fall which was then followed by a seizure. Ryens fall also caused a brain bleed and skull fracture. Due to the seizure, Ryen underwent an EEG and this determined her diagnosis of epilepsy. Since then, Ryen has b...een taking anticonvulsant medication, which she says has caused side effects such as weight gain. Despite the medication, Ryen was still experiencing seizures frequently. It was discovered that alcoholic drinks were causing an increase in seizure activity, so Ryen has to be careful about what she consumes. She states: I am no longer allowed to drive. I am seeing my neurologist this month in the hope that I will be able to come off my medication. It is now thought that I am overcoming my epilepsy and any seizures I do have could now be caused from stress. Ryen is originally from Cairns and moved to Brisbane for medical treatment. She is now 24 years old and shares: I have had to be careful with epilepsy but I have made sure it doesnt affect my day to day life. I am hoping for a strong future, free of my eating disorder and epilepsy. I am planning to finish my nursing degree and hoping to volunteer with Epilepsy Queensland. Dont let your epilepsy diagnosis define you!!! Ryens story highlights the importance of self-care and managing seizure triggers where possible. Please find more information about seizure triggers here: https://bit.ly/Seizuretriggers and stay tuned for more seizure safety and first aid tips for #SeizureSmartSeptember. Thank you Ryen for being so open about your challenges. If you can relate to Ryens story or would like to leave a message of support, please do so below.

21.01.2022 Jeremy Drabsch is ultra-impressive. With zero running experience, he is aiming to run an Ultra marathon of 50km in December for epilepsy awareness. Jeremy, 27, told the The Western Times that he has always wanted to do something for his younger sisters Courtney and Portia, and being locked up during COVID-19 started a fire in him to run a marathon even though he's never run before. "I've always wanted to do something for both of them, and in general for epilepsy, because I ...feel like many people don't grasp the impact it can have on peoples lives," he said. Jeremy says not a lot of people seem to comprehend the true devastation epilepsy can have on families, and his goal is to raise that awareness. "The charity I chose, Epilepsy Queensland, does do research, helps to support people with epilepsy, but they also do a lot of awareness work," he said. "That would be the main goal, even if I just inspire my main group of friends, if they go away with a better understand of epilepsy, then that's sort of mission accomplished to me." Whenever life gets tough, Jeremy says his sisters help him stay grounded. "They're so strong and happy, it's very inspiring for me to keep that in perspective to think back to what they have to deal with and still stay strong," he said. Help Jeremy honour his sisters and reach his $10 000 fundraising goal: www.facebook.com/donate/331010234673556/ Words abstracted from The Western Times

20.01.2022 Do you encounter difficulties related to brain fog? This handy infographic via @_livingwithbehcets (Insta) outlines some of the impacts and may help to explain your experiences to others. Things that may help cope with the impacts of brain fog:... Establishing routines Writing things down Setting reminders in your phone Reducing distractions Repeating new information Using productivity apps might also prove useful- are there any that you can recommend?

19.01.2022 Join us for a Facebook Live Q & A for Disability Action Week with Paralympic gold medalist Lakeisha Lucky Patterson OAM and Epilepsy Queensland CEO Chris Dougherty. Lakeisha lives with epilepsy, cerebral palsy and micrographia and has already achieved so much at the tender age of 21. Well be talking to Lakeisha about how to support people living with epilepsy and other disabilities to fulfil their potential through speaking up, raising awareness and standing up for inclus...ion. Lakeisha will also share how she overcame the challenges and disappointments of COVID-19 to reboot her preparations for the Paralympics in Japan. There will also be the opportunity to ask Lakeisha questions in real-time. Don't miss this excellent event!

19.01.2022 Merry Christmas to our wonderful community! We hope you enjoy a relaxing day with loved ones and we look forward to working with, and for you in a bright new year ahead. Just a reminder that our office and helpline reopen from Monday 4 January. For general information about epilepsy, you can always visit our website: www.epilepsyqueensland.com.au

19.01.2022 Happy New Year to you , to all of the epilepsy warriors, and fantastic family members and friends in our wonderful community. What are you most looking forward to in 2021? Share your hopes with us here. 2020, a year that was hugely challenging for so many, is behind us and now we turn our attention to 2021 in the hope of a better year ahead. N.B. Your responses may be used with attribution across our social media channels.

18.01.2022 Not every seizure is an emergency, but there are times when calling 000 is critical. If the seizure lasts longer than 5 minutes If a second seizure follows If the person is non-responsive 5 minutes after the seizure... If it is the persons first seizure If the person is injured or food or water is involved Please help us get this life-saving information out there! Our community is strong and we take action!

18.01.2022 As we enter the last month of 2020, we want to give a shoutout to all of the epilepsy warriors out there and to the people who love and support them. We would love to know in the comments below if you are a person with epilepsy, a family member or friend.

17.01.2022 myepilepsywarrior- Abigail's story You wouldn't know it from Abigail Quabba's adorable smile, but along with her devoted parents Danica and Jason, (of Ingham, North QLD) the three year old has faced some very tough challenges for one so young. Despite having her first noticeable seizure at three days old, Abigail was diagnosed with multi-focal epilepsy after a 24-hour EEG at 20 months old by Brisbane Paediatric Neurologist Dr. Shah. Fortunately, a combination of the ketog...enic diet and medications has resulted in recent health improvements for Abigail. Read on to find out more. Abigail had tried many medications, unfortunately none of which have impacted the severity or length of her seizures. Different side effects her family noticed included severe mood swings, rages, sleepiness, appetite changes, and cognitive dampening. As Abigail became older, the frequency of her seizures intensified. Danica shares: It was really difficult as a parent to watch your child's personality change so severely. Currently, she is being treated with Clobazam and Fycompa and is on the ketogenic diet. Due to her ASD and sensory differences, she is now tube fed on the diet and is awaiting her Gastronomy (G) Tube operation. (where a tube is inserted through the belly that brings nutrition directly to the stomach.) Abigail has also experienced many life-threatening episodes. Danica recalls tough times: "Before gaining a degree of seizure control, our days would consist of six or more seizures and at least an overnight stay in hospital for Status Epilepticus weekly. We had a two-week period last November where Abigail experienced over 120 clinical seizures. I honestly thought at times during those two weeks we wouldnt be going home and that was by far the toughest time in this journey. Recently, Danica relays things have been headed in a more positive direction. Abigail is doing really well on the ketogenic diet and we are hoping to wean off all her meds over the next six months. Since we have started weaning certain medications, we have noticed Abigails memory and cognition improving which has been amazing. My hope for Abigail is that she can live her best life and enjoy the small victories! My ultimate goal for her would be seizure freedom, but I guess we will see what the future has in store for us. You can read more about the family's journey here: www.epilepsyqueensland.com.au/news/abigails-epilepsy-story Thank you Danica for sharing your epilepsy warriors story and helping to raise awareness in the community. We wish you and your family the very best in the future Messages of support are encouraged below Danica and our services team are happy to answer any questions you may have.

17.01.2022 Congratulations and a very BIG THANK YOU to our fearless flyers who took part in our iFLY Brisbane indoor skydiving challenge on Saturday. An incredible $11, 610 was raised which will go towards Epilepsy Queensland's vital services such as our helpline to support Queenslanders impacted by epilepsy. You truly are all warriors and we are deeply grateful for your support- we hope you had a blast and soared beyond your own expectations. ... Please join us in congratulating these daredevils who have made a difference below!

16.01.2022 It's #WorldFirstAidDay and today we would like to highlight some water safety tips and first aid for people who experience seizures. A seizure in water is a life-threatening situation. 1. Supervision when swimming ensures people with epilepsy can participate safely, but ALWAYS seek advice from your doctor before swimming. 2. EVEN if your epilepsy is well controlled, you should NEVER swim alone.... 3. ALWAYS have a swimming companion who is a strong swimmer and will stay close, knows what your seizures look like, and knows WHAT TO DO should a seizure occur. For more information including our "Seizure First Aid- when swimming" factsheet: http://bit.ly/FirstAidSwimming #SeizureSmartSeptember

15.01.2022 #myepilepsywarrior- Ollie Meet Ollie (the cutest Hulk/Doctor Buzz Lightyear around) from Ipswich, who is 5 years old. Ollie is always smiling despite the many challenges of life with epilepsy. Loving Mum Codie says:... "We are in hospital for 3 days of video EEG monitoring for Ollie's seizures. We think that he may be having some seizures again so they brought him in to monitor for a few days. An EEG is small electrodes that are stuck onto his head and they detect the electrical activity in the brain. Ollie's seizures are hard to notice as they can happen very silently. Small little things that I notice though are excessive blinking, jerks, and vague moments. Hopefully, these next three days go quickly! But for now, it’s dress ups and lots of activities in bed " We are thinking of you Ollie and Codie and hope you get some answers soon. We'd love you to leave this little epilepsy warrior a special message below or tell us about the special epilepsy warrior in your life?

15.01.2022 Whatcha doin' on Friday? On the Sunshine Coast and love a good coffee? Well, the coffee at Whatcha Brewing Specialty Coffee Co is extra good on Friday, because wonderful business owner Harrison Hedges is pledging $1 from every cup of coffee purchased to Epilepsy Queensland in support of our #SeizureSmartSeptember campaign. https://bit.ly/SeizureSmartSep Every in-store purchase will also receive a raffle ticket with the chance to win some FANTASTIC prizes! See the Facebo...ok event for a complete list: http://bit.ly/CoffeeEpilepsyAwareness 1 in 10 people will experience a seizure in their lifetime. Your purchase will not only contribute to Epilepsy Queensland's essential services including our specialised Seizure First Aid training but also support a small local business. Harry, who lives with epilepsy and cerebral palsy, established Whatcha Brewing after experiencing challenges with employment. "I have lived with epilepsy since birth and want to show my support for a cause close to my heart," he says. Whatcha Brewing Co is located at Big Top Shopping Centre, 20 Ocean St, Maroochydore. Can't make it in but would like to show your support? Why not donate the cost of a cup at the button below? Thanks a latte!

15.01.2022 Does your school community or work colleagues know what to do if someone has a seizure? Thanks Dwayne for helping to raise awareness by displaying and sharing our Seizure First Aid poster at your workplace. Have you shared them yet? We would love to see your pics when you do! ... You can access our downloadable resources for #SeizureSmartSeptember here: www.epilepsyqueensland.com.au//seizure-first-aid/seizure-f

14.01.2022 Our team enjoyed a lovely Christmas break and our office and helpline are now open again for 2021. If you'd like to get in touch, please contact us on the Epilepsy Helpline 1300 852 853 between 9am and 4pm Monday to Friday.

14.01.2022 Do you have trouble sleeping? Lack of sleep or poor sleep quality can be a seizure trigger for many people living with epilepsy. Today is Festival of Sleep Day, so we are resharing some tips courtesy of @SleepHealthFoundation on how to achieve a good night's rest. For more on seizure triggers, please visit: https://bit.ly/Seizuretriggers

14.01.2022 Our Annual General Meeting (AGM) and Awards night is usually held each year in early December. With the uncertainty of COVID-19, our board made the decision to hold the formal components of the AGM separate to our awards and celebration. The AGM was held last night at our office at Woolloongabba. Epilepsy Queensland's CEO, Chris Dougherty states:... "Strong, stable governance is the cornerstone of any organisation and I am really pleased to see all existing Board Members re-elected to their positions. Chairman - Sam Bryce Deputy Chair - Kim Davis Treasurer - Kalvin Booth Secretary - Louise Prychidczuk Board Members - Charmaine Driver, Murray Fairgrieve, Andrew Barnes, William Tuffley, Katrina Tune, Simon Watt I look forward to working with the Board on bringing our new vision and strategy to life over the coming years!"

13.01.2022 Did you know some people live with both a diagnosis of epilepsy and Functional Neurological Disorder (FND?) Some symptoms of FND can look like an epileptic seizure but the pathology is not the same. Functional Neurological Disorder (FND) is a collection of symptoms such as blackouts, paralysis, and atypical movements that suggest the presence of an underlying neurological condition, yet cannot be explained by disease or anatomical abnormalities. Find more information and links to resources here: https://bit.ly/FNDinfo

13.01.2022 Our #SeizureSmartSeptember appeal is in full swing- but we need your help to make it a success! Show your support for people impacted by epilepsy and seizures. Check out your local pharmacy for our $2 awareness tokens with seizure first aid information. (As expertly showcased by Matt here!) Can't make it into a pharmacy? You can still show your support by shopping our purple epilepsy supporter merchandise online here: https://bit.ly/EQIshop... or making a donation instead: http://bit.ly/eqdonate A big thank you again to the Pharmacy Guild of Australia, QLD and our transport partners Official Followmont Transport Pty Ltd for all of their support.

12.01.2022 Do you know the seizure first aid steps if someone is in a chair? Please take the time to review the appropriate response below. This information applies if the seizure is occurring in a wheelchair, a stroller or pram, or if someone is seated, for example on a bus or train. Pass it on this #SeizureSmartSeptember and find more information here: https://www.epilepsyqueensland.com.au//first-aid-for-seizu

12.01.2022 How do you or your loved one like to be supported AFTER a seizure? Even when seizures are brief, the after-effects and impact can be long-lasting for the person- recovery doesn't necessarily happen immediately. It is possible the person will feel drained or exhausted, confused, anxious or agitated.... Please tell us about your experiences below so we can educate people on how to best care for and support people recovering from a seizure.

12.01.2022 With the festive and holiday season upon us, many people enjoy relaxing or celebrating with an alcoholic beverage. However, it is important to be aware that alcohol may be a seizure trigger for some people living with epilepsy. While some people with epilepsy have seizures that are very sensitive to even small amounts of alcohol, many can enjoy an occasional beer or two or a glass of wine with dinner. The key is to ensure the principle of moderation. Moderate alcohol intake is having no more than two standard drinks in a day and preferably not every day. To be safe, ask your doctor about the effects of drinking alcohol with the medication you have been prescribed.

12.01.2022 Former Epilepsy Queensland CEO recognised with community contribution award The Pharmacy Guild of Australia, Queensland Branch held its annual dinner at Parliament House in Brisbane last week. Helen Whitehead, former Epilepsy Queensland CEO, was recognised with an award for her outstanding contribution to the community. For 28 years, Helen assisted Queenslanders living with epilepsy by helping to reduce stigma and discrimination by raising community awareness and promotin...g understanding. The Pharmacy Guild of Australia, Queensland, has been a supporter of Epilepsy Queensland for most of this time. We are thrilled for the acknowledgement of Helen and the wonderful relationship Helen has helped to build with the The Pharmacy Guild (Queensland). Their support of our current #SeizureSmartSeptember campaign is invaluable. Read the full Australian Journal of Pharmacy - AJP article here: https://bit.ly/2Fz0Gem : (provided by Pharmacy Guild of Australia, QLD) Kos Sclavos AM, Helen Whitehead, Deputy Premier the Honorable Dr Steven Miles - Health & Ambulance Services Minister & MP for Murrumba and Pharmacy Guild Queensland Branch President Trent Twomey. Australian Pharmacy Assistants The Dispensary

11.01.2022 REMINDER UPCOMING SPECIAL EVENT- Check the comments for the link! #DisabilityActionWeek begins today and is being celebrated from 13 to 19 September. This years theme Access-ability making things better for everyone highlights the benefits of improved accessibility, not only for people with disability but also for the whole community. Remember to tune into our special FB Live event with Paralympic swimmer and gold medalist Lakeisha "Lucky" Patterson OAM this upcoming... Wednesday from 12 pm - 1 pm AEST. Well be talking to Lakeisha, who lives with epilepsy, cerebral palsy, and micrographia, about how to support people living with epilepsy and other disabilities to fulfill their potential through speaking up, raising awareness, and standing up for inclusion. There will also be the opportunity to ask Lucky questions in real-time. Can't make it? Leave your questions below and we will cover them in the session. [Image description: A cartoon illustration featuring several groups of people with disability, and text outlining the theme of Disability Action Week.]

11.01.2022 We were blown away by the INCREDIBLE community support for this year's #MakeMarchPurple campaign for epilepsy awareness. To everyone who held an event, fundraised or donated, wore purple, coloured their hair or nails, climbed the story bridge, took the #purplemuckchallenge, shared their story, mentioned us on social media, took a snap of our purple illuminations, or started all-important conversations about epilepsy- YOU ARE ALL PURPLE HEROES. We appreciate each and eve...ry single contribution- we cannot achieve our vision to be a beacon of hope for people living with epilepsy without your enthusiasm and generous support. We hope you enjoy these pictures and feel a great sense of pride in the community spirit they represent. Have you shared a snap with us yet? #epilepsystrong #hopeforepilepsy

11.01.2022 Seems like solid advice. What do you think? Here's hoping 2021 is good to all our epilepsy warriors and supporters. @lindseysanderson

11.01.2022 After a seizure: "It's not just "wake up and go" like you see on the TV." - Tahnee Bryan Recently we asked our community members to share what they feel or experience after a seizure. A common misconception about epilepsy is that when the seizure is over, the person recovers quickly. In reality, for many people living with epilepsy, the after-effects of a seizure can have a significant impact on the person long after the seizure event itself.... Thanks to everyone who shared with us their own experiences- we have compiled just some of them here

10.01.2022 What does the term "warrior" mean to you? The word is frequently used to describe a person who is very strong and doesnt give up easily...little wonder that it is so often used to describe a person who battles #epilepsy. Sending big purple love to all our epilepsy warriors today and every day : @epilepsy_warr (Instagram)

10.01.2022 There are just days left to play for a purpose- just imagine how $250k would change your life! Its a win/win - $50 in tickets will help us provide support to a child (and their family) who has recently been diagnosed with epilepsy. Tickets are limited, so get yours today to be in with a chance to be our next big winner! Click here: http://bit.ly/eqraffle Thank you for supporting Epilepsy Queensland and good luck.

10.01.2022 Chiaras epilepsy story Chiara experiences catamenial epilepsy - seizures triggered by female hormones. This was diagnosed by a neurologist when Chiara was 19 years old, after she started having short absence seizures regularly and not knowing what they were. Chiaras current treatment includes three different types of medication taken each day at four different times. She reports the side effects are mostly tiredness and loss of memory.... Chiara also describes other challenges: My biggest daily challenges would be the loss of my drivers license and not being able to go to places easily that most people can, such as shops or restaurants or visiting friends. Other challenges beyond the medication side effects are the costs involved in buying medication and doctor visits. Chiara has also experienced a few life-threatening incidents related to her seizures: I once had a complex partial (focal) seizure and walked onto the road and oncoming traffic while walking to work one day. Luckily, I was not run over. The worst day was when I had a tonic- clonic seizure and dislocated my shoulder alone at home. Despite these challenges, Chiara is able to work as a lawyer and fortunately has not experienced much discrimination in her current workplace. She describes the birth of her healthy baby daughter as her best day. When asked about her hopes for the future, Chiara, now 38 years old and living in Brisbane shares: The future hopefully holds new medicines which actually keep my absence seizures under control so I can live a normal life without the fear of having a seizure at any given time. But that is unlikely as I have tried many different types of medication, supplements and hormone treatments which have not worked. More broadly, I hope people living with epilepsy are not stigmatised or discriminated against by society. Chiaras message is While living with epilepsy is definitely not easy, don't let it take over your entire life. Concentrate on the good things in your life and do not let epilepsy define you as a person. And definitely dont put up with bullying or discrimination. Thank you, Chiara, for sharing this message and a bit of your story with us. If youd like to leave a message of support for Chiara, or share your own story, please comment below

09.01.2022 TUNE IN Thank you David Iliffe from ABC Southern Queensland Breakfast Show for chatting with our brilliant Services Development Officer, Leonie, about our #SeizureSmartSeptember campaign. Raising awareness of seizures and the appropriate first aid response in the community is so important given 1 in 10 people will experience a seizure in their lifetime. We are grateful for this public opportunity to speak our message- have a listen here from about 3:07:10 https://ab.c...o/3moMPbp Well done Leonie!

09.01.2022 HAIR for Hope St Francis Xavier Primary School at Goodna recently held their annual Crazy Hair Day fundraiser for Purple Day. This is the school's FOURTH year of holding this epilepsy awareness event. Despite having to postpone due to COVID-19, we think you'll agree the kids and parents went all out this year! This event brought the school's total raised for Epilepsy Queensland in 2020 to $541.30 Thank you! What an astounding effort- which is your favourite? Pick ...a number and tell us below. An estimated 12,000 children in Queensland are currently living with epilepsy. Purple Day is a wonderful way for your school to show support for children and teachers living with the neurological condition. Save the date, March 2021 and register your school here http://bit.ly/PurpleSchools

09.01.2022 We are busy prepping for Purple Day 2021 and we need your help! Who should our Purple Plush friend be for next year's celebrations? Vote for your favourite! LIKE react for Lemur LOVE react for Meerkat... Are there other cuddly friends or purple merchandise options you would like to see available, such as ribbons, pens, wristbands? Let us know us in the comments below

09.01.2022 Do you know how to respond if someone is experiencing a focal seizure? In a focal seizure, the person may have altered awareness and appear unresponsive or confused. Automatic movements such as lip smacking, wandering or fumbling hand movements may be present. It is best practice to time seizures if possible. The person may not be aware of their surroundings during the seizure you may need to gently guide the person past obstacles and away from dangerous objects or situati...ons. As the seizure finishes, support and reassure the person. If the person doesn't start to recover after 5 minutes, call an ambulance. Let's educate the public- please share for #SeizureSmartSeptember

08.01.2022 Good News Story Well done Samara! A timely story about the importance of being able to identify a seizure and respond swiftly. This #SeizureSmartSeptember we are aiming to ensure one person in every household knows what to do should they encounter someone experiencing a seizure. Find out more here: https://bit.ly/SeizureSmartSep

07.01.2022 What a sweet note all the way from the U S of A! Little Poss is the mascot of our Children's Program. He lives with epilepsy as some possums do and apparently, his reputation is international! A big shout out to you Ramsey - your thoughtful note has brought much delight to us here in Australia

07.01.2022 Auswide Bank show their support during Epilepsy Awareness Month November is Epilepsy Awareness Month. We are incredibly grateful to Auswide Bank for showing their support for people living with epilepsy by raising awareness and funds for Epilepsy Queensland. Auswide dedicated their State of Origin Boardroom lunches to promote epilepsy awareness and raise funds. They also held a cupcake drive, circulated epilepsy awareness information to their staff via their intranet and... on their website. A special thank you to their Head Of Private Bank, Elsewerth Ephraums. Elsewerth is a former board member and a wonderful advocate for Epilepsy Queensland.

07.01.2022 Nigels story Today, Nigel shares a bit about his story and experiences to help raise awareness of epilepsy and seizure first aid for #SeizureSmartSeptember. Nigel was 14 years old when he experienced his first seizure, and has lived with epilepsy for over 42 years. After his parents took him to hospital, a neurologist confirmed it was epilepsy within a very short time frame.... Nigel says: The seizures became more frequent and I have gone through many periods of trialling different medications in the hope of gaining stability. I have had numerous seizures in public places. My experience is that a lot of people do not know the correct first aid procedure, but do call 000. I had one person attempt CPR thinking it was a heart attack. Nigels seizures are often tonic-clonic, and says when he was at his worst, it was not uncommon to have multiple seizures. He recounts: My wife was a tremendous tower of support when I was very sick. She was told about 4 times I would not survive. I am so grateful for the support and prayers of wonderful family and friends. Along this journey I did slip into depression on a number of occasions. I realised that even with all the love and support I had, only I could change my state of mind and win this battle. Nigel found with each setback this became harder and harder to overcome: Over the years, I have lost many jobs and had to close two businesses. Having large gaps in between jobs and epilepsy made it very hard to find employment. I have shared my story at a business conference, in a number of small groups, and with people experiencing mental and physical struggles, with great response. This has given Nigel a greater passion to share his story, ensuring there is a greater awareness of epilepsy and appropriate first aid procedures in the community. Encouraging others with epilepsy is a vital part of this, he says. Whilst Nigel acknowledges social media is a great tool to reach many people, he believes speaking in a public environment such as a school or community organisation has a much greater impact. Thank you Nigel for sharing your story to help raise awareness of epilepsy and seizures. To learn more about this campaign, please check out: https://bit.ly/SeizureSmartSep As always, messages of support from our wonderful community are encouraged.

06.01.2022 Have you regained your driver's license after your epilepsy diagnosis? While not possible for everyone, people with epilepsy can obtain a conditional driver's license if their seizures are well-controlled by medication. Generally, this is also dependent on observing an appropriate seizure-free period, compliance with medical treatment and fulfilling prescribed guidelines set out by the relevant Driver Licensing Authority for their state. Find more information about epilepsy a...nd driving here: https://bit.ly/EpilepsyDrive or call our friendly services team on 1300 852 853. At Epilepsy Queensland, we understand the challenges relating to a change in driving status, even if this is on a temporary basis. Our team can discuss concerns and options for travel assistance and mobility allowance.

06.01.2022 Do you have a Happy Birthday message or memory you'd like to share about our amazing Patron Wally Lewis? It's his special day TODAY! Wally has been our Patron for over 10 years and is a tireless advocate and support for people living with epilepsy. Wally is not only a sports champion, but a champion in raising awareness and advocating for the understanding of epilepsy in the community. He generously gives his time to appear as a guest speaker at Epilepsy Queensland functio...ns and never hesitates to spend time with our members and supporters. We love working with you Wally and hope you have an amazing day! Leave your message here.

06.01.2022 Today is R U OK Day? Will you start a conversation that could make a difference today? If you need to talk to someone our Helpline is open 9 am-4 pm weekdays 1300 852 853. credit Doodlebot

06.01.2022 TikTok will add an epilepsy warning to photosensitive videos TikTok is adding a new feature that will help people living with epilepsy to avoid potentially dangerous photosensitive content, according to The Verge The short video platform already warns creators if their uploads contain effects that could trigger a seizure, but now anyone who encounters an example in their feed will get an alert that allows them to opt-out of viewing such content in the future.... Tap for more: https://bit.ly/362OFIT Recently, TikTok has been working with a number of international epilepsy organisations to clean up its platform, partly in response to criticism it received about the Seizure Challenge which featured people imitating individuals having a seizure. Here at Epilepsy Queensland, we are pleased to see these new safety and accessibility measures introduced. We hope this sets an example to other social media platforms to introduce mechanisms to protect users with epilepsy from online harms.

05.01.2022 Ever wondered about the Video EEG testing process? Read on for Bronwyn's VEEG story where she shares some of her experience with us. In August, Bronwyn travelled two hours from her Northern NSW home to undergo the in-hospital VEEG. After being admitted to the epilepsy unit, Bronwyn was firstly hooked up to a monitor. "The technician placed electrodes on my scalp to read brainwaves. They placed a button in my hand to press each time I had a seizure to see the brain activ...ity," she explains. During her hospital stay, Bronwyn's medication was stopped and she was deprived of sleep to try and provoke seizure activity. This was successful and the week-long VEEG captured two different seizure types. The first type, which presented as jerking upper limbs and shaking of the head with several minutes of unresponsiveness, was determined to be non-epileptic seizures. The second seizure type, which features clonic jerking of the left side of Bronwyn's face and tonic posturing of the left arm were classed as focal seizures. During her stay, Bronwyn recalls a confronting experience: "I became friends with a young lady in the opposite hospital bed. One day, I witnessed her having a seizure in front of me. This was the first time I had ever witnessed someone else having a seizure." Bronwyn recalls feeling upset and helpless: "All I could do was press the buzzer to call for help." Bronwyn also describes a more positive experience during the testing which she describes as "the best day ever": "Pet therapy came around with dogs. I got to met a beautiful Cavalier Cocker Spaniel- her name is Ladybell and she melted my heart." Thanks for your insights Bronwyn. If you have any questions, Bronwyn is happy to answer below.

05.01.2022 Hamish's epilepsy story In this story from SBS_Australia, Hamish's mother Tracey shares her perspective as a parent of a child who lives with difficult-to-control seizures. Despite the challenges, Tracey retains hope:... "My hope is that one day research can find a cure, or effective drugs, for these types of seizures. The more we talk about it the more we’ll be able to remove the shame and stigma that seizure sufferers often face. The more it’s discussed also means more awareness and more funding for research. In the meantime, as a mother, I will continue to do all I can to help my son and others like him." Tracey received support from our friends and affiliate organisation in Victoria, Epilepsy Foundation of Australia If you relate to this story send your message of hope to Tracey and Hamish below

05.01.2022 When 20-year-old actor Cameron Boyce passed away suddenly after experiencing an epileptic seizure in July 2019, few people knew that behind the scenes, he was privately battling epilepsy. Cameron's parents Victor and Libby Boyce are now on a mission to cure epilepsy and eliminate Sudden Unexpected Death in Epilepsy or SUDEP, which was determined to be the cause of Cameron's death. They founded The Cameron Boyce Foundation shortly after their loss. The foundation is raising mo...ney and partnering with agencies to fund epilepsy research. They are also working to raise awareness that epilepsy can be fatal. SUDEP has few warning signs; Libby explains that they don't want to scare people. Instead, their goal is to "make clear that if you have epilepsy, learn as much as you can and advocate as much as you can with your physicians." You can read the full story here: http://bit.ly/SUDEPstory We know the topic of SUDEP raises questions and can be worrying for some to think about. To learn more about SUDEP https://bit.ly/SUDEPinfo You can also speak confidentially to a member of our Services Team on 07 3435 5000 (Brisbane metro) or 1300 852 853 (outside Brisbane.)

04.01.2022 SAVE THE DATE - Epilepsy Queensland Impact Awards We're making some changes to our annual awards including a move to February. Join us on Monday, 8 February 2021 as we launch our new vision and strategy and come together and celebrate the achievements of the epilepsy community over the last year. This date has significance in the calendar as it coincides with International Epilepsy Day. For details and to register, visit: https://bit.ly/EpilepsyDayAwards... Do you know someone who has had a life changing impact on the epilepsy community? Let us know in the comments below about someone who has had a special impact on your life

03.01.2022 Hi there Queensland women - are you looking after yourself? This week is Women's Health Week and we would like to encourage you to take care of you and focus on your health and well being. Checking out our dedicated epilepsy resources for women is a great start. We have quality information prepared by neurologists here: www.epilepsyqueensland.com.au/living-well/women-and-epilepsy Did you know?- The Metro North Comprehensive Epilepsy Service based at Royal Brisbane and Women...'s Hospital offers a specialised service for women with epilepsy. This includes contraception in the reproductive years, planning to conceive, pregnancy, the postpartum period and beyond the childbearing years. To access this service, your GP or medical practitioner will need to send a referral letter to the hospital. Remember if you need support, information or a confidential chat, we are just a phone call away on 1300 852 853. Drawn by Mary

03.01.2022 #1in10hero- Renee Williams Epilepsy Queensland ambassador Renee Williams is on a mission to raise awareness of epilepsy and seizures to educate the community. This year, Renee participated in our # 1in10challenge and committed to writing 10 blog posts over 10 days to raise much-needed funds and awareness of seizure first aid. It's important to Renee, who lives with epilepsy, that people living with the condition understand that they are not alone.... "I don’t want others to feel so alone and scared and the only way to stop that is to break the cycle by speaking out and shining a light despite all the fears and negativity around it." Writing about her personal experiences and varied topics such as epilepsy and sport, relationships, mental health and much more, Renee has cultivated a platform where she hopes people can "enjoy, learn, share and connect." Despite finding blogging for 10 consecutive days quite challenging, Renee accomplished her goal! You can read Renee's blog entries here: https://purpleadventures.com/blog-entries-2/ Congratulations Renee on completing your # 1in10challenge and for being a tireless advocate for epilepsy awareness.

03.01.2022 Have you or your organisation completed our specialised Understanding Epilepsy training? There are just 8 spots left for our upcoming training workshop this Thursday Oct 15 and one further session for the year. Places are strictly limited due to COVID-safe measures. Be quick and register today: http://bit.ly/OctWkShop

02.01.2022 What inspires you? Today is #MotivationandInspirationDay. We are constantly inspired by the fighting spirit of the epilepsy warriors in our community. Just a reminder, no matter your struggles, give yourself credit for progress achieved, and small steps count! @battlewithchronicillness

02.01.2022 Today is National Christmas Lights Day! Do you enjoy getting festive, decorating your home or business with a Christmas light display? Spread joy, hope and the spirit of giving this season by turning your Christmas lights on for Epilepsy Queensland, like Toowoomba resident Naomi Kirstenfeldt. "We have a family member very close to home who lives with epilepsy. Epilepsy Queensland has a donation box that will be below the sign in our yard. Every cent counts towards making a... difference to the people that experience many forms of epilepsy." Thanks Naomi! The stunning display (pictured) in Hoepper St will light up from tonight, Dec 1 and also feature music this year. Check it out if you are a Toowoomba local. Epilepsy Queensland has donation tins, posters and other fundraising resources available if you'd like to help to raise epilepsy awareness and funds in conjunction with your lights display this year. For more information send us a message or call 3435 5000 for Lisa. Our website includes some information on photosensitive epilepsy and flashing Christmas lights. http://bit.ly/EQphotosensitive Naomi Kirstenfeldt

01.01.2022 Brett takes the cake (and a purple lemur!) Today we would like to wish a very Happy 26th Birthday to Brett Petersons, who visited us in our Woolloongabba office. Brett chose to celebrate his birthday this year with a Facebook fundraiser for Epilepsy Queensland- thank you amazing human! A birthday fundraiser is a great way to encourage others to support a charity or cause close to your heart Why not help raise funds and awareness of epilepsy on your next special day a...nd make an impact! Create your Facebook fundraiser here: http://bit.ly/3oPKS80 and help us wish Brett a Happy Birthday here!

01.01.2022 Does this happen to you? We'd love to hear your tips for overcoming memory issues associated with epilepsy.