1 - 25 October Walk For Epilepsy - awareness and fundraising
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Edition 45, 2021
Hi Friend,
A life interrupted ...
In the last little while I have been doing some thinking about the 'tags' we wear.
During October, many of these tags highlight specific issues people face: Seniors' Week, Carers' Week, Mental Health Week, Children's Week, Anti-Poverty Week, SUPEP Action Day (see below for more info on this) and so on.
People with epilepsy often describe their life as if it has been interrupted and labelled.
The lives of people who do not have their epilepsy well controlled with medication, or who don't have access to the support they need should be viewed like an iceberg: what you see above the water is only a small part of the many interruptions they are experiencing.
This October, I plan to have many curious conversations in the hope to understand more about people's lives and the tags they have to live with. My hope is that Epilepsy Tasmania will be able to share the voices of those who have been given a label but whose interrupted life story has not yet been heard.
I hope you will join me this month in pondering the effect of your interactions and tagging.
Wendy Groot, CEO Epilepsy Tasmania.
Are you Walking for Epilepsy?
We are very excited to once again be part of this year’s Walk for Epilepsy and partnering with epilepsy organisations around Australia to bring you a truly nationwide event.
For 25 days in October, Epilepsy Tasmania is walking with Epilepsy Foundation VIC/NSW, Epilepsy QLD, Epilepsy ACT, The Epilepsy Centre SA/NT, Epilepsy WA and Epilepsy Australia to show our support for the 1 in 25 Australians living with epilepsy.
No matter where you are, you can join in the fun.
This is Australia’s largest event for epilepsy, as we are making the whole country our virtual walking track.
Together, we’ll walk, run, swim and cycle to raise awareness and much-needed funds to support people with epilepsy, and their families.
It's not too late to join us and you can signup for free at https://www.walkforepilepsy.org.au/event/tas
Or why not just sponsor a Tassie person or team already signed up? It's easy and can make a real difference to lives!
Live Facebook Peer Support Session
We are pleased to offer our first live private Peer Support session to all members of our Facebook group “Epilepsy Connect Tasmania: Families, Friends and Carers”.
Members will be able to access our private video chat room on Facebook from 10 to 11 am on October 27th.
The group will be facilitated by Amy (our Peer Support Coordinator) and Shirl (our Social Worker/Educator).
In this first Peer Support session we will:
- Share stories, challenges, fears, questions and concerns about living with epilepsy.
- Provide lifestyle tips, shared understanding, support, encouragement and compassion.
- Give you the opportunity to share your own challenges of living with epilepsy.
- Aim to reduce your feelings of isolation, normalise your condition and increase your feelings acceptance and connection.
- Ask what you might like future groups to include and which days and times work best for you.
We will not:
- Provide professional medical information. But can provide referral information.
To participate in this live peer support session you need to be a member of the private Facebook Group: Epilepsy Connect Tasmania: Families, Friends & Carers.
SUDEP Action Day Webinar
Thursday, October 21, 2021
1:00 pm CDT - which is 4 am Wednesday morning in Tasmania. However if you register for the webinar you can access a recording of it anytime.
Last year's SUDEP Action Day webinar showed strong evidence of the association between breathing problems and SUDEP.
However, there is also equally strong data for cardiac abnormalities, particularly cardiac arrhythmias (irregular heartbeat) playing a role in SUDEP. In fact, studies have found mutations in genes associated with cardiac arrhythmias in 15% of SUDEP cases. (1)
This year's webinar will provide information on how inherited neuronal or cardiac diseases may lead to electrical disturbances in both the brain and heart, how altered cardiac function may lead to SUDEP, and why it is critical for the epilepsy community to take a holistic approach to fully understand biological changes that ultimately cause SUDEP.
The webinar is free to attend and is intended for everyone, including persons with epilepsy, their friends and family, and caregivers. You can submit questions in advance to research@cureepilepsy.org or during the Q&A section of the webinar.
More information about SUDEP including updated information regarding risk factors is available here: http://www.epilepsyaustralia.net/epilepsy-sudep/
1. Bagnall, R.D., Crompton, D.E., and Semsarian, C. Genetic basis of sudden unexpected death in epilepsy. Neurol. 2017; 8: 348.
Tasmania’s Best Puzzlers
Two weeks ago, 18 teams of Tasmania’s best puzzlers went head to head for a spot in Australia’s National Jigsaw Puzzle Competition.
“The aim of the competition is to complete a jigsaw puzzle as fast as possible, in the shortest amount of time,” said event organiser, Maria Noble, from The Puzzle People shop in Richmond.
There was music and entertainment throughout the event, a sausage sizzle, refreshments and raffle prizes.
Over $5,000 was raised on the day and donated to Epilepsy Tasmania.
“Tasmania has Australia’s highest prevalence of epilepsy, a neurological condition that is the second most burdensome after dementia, so I am very grateful to The Puzzle People for their support and wish all competitors the best of luck,” said Wendy Groot, CEO of Epilepsy Tasmania.
The winning team (sisters Anna and Sara, pictured top left and also during their TV interview) will represent Tasmania in Melbourne early next year (subject to COVID-19 restrictions), where they will compete to represent Australia at the World Jigsaw Puzzle Championships in Spain, in September 2022.
Congratulations to all Puzzle Challenge finalists:
1st - Anna and Sara
2nd - Laura and Paula
3rd - Samantha and Shiree
4th - Vic and Tracey
And a huge thank you from Epilepsy Tasmania to everyone who organised or attended this event.
And the winner of our Fathers Day competition was .....
Amy Summer!
Epilepsy Tasmania had special QR codes located around Tasmania and Amy scanned one at Mr Johnson’s Eat and Drink Café in Kingston Town Shopping Centre, where she went to a link and answered the question of how many people in Tasmania are affected by epilepsy.
One thing we noticed in our competition entries is that most people still have no idea that 1 in 25 Tasmanians will develop epilepsy at some point in their life, or that four times this number of family, friends and colleagues are relied on to support them in some way.
This competition highlights the need for ongoing community education about epilepsy and its high prevalence here in Tassie.
Amy has won two tickets from Pennicott Wilderness Journeys to experience a 3-hour cruise with her choice of Bruny Island Cruises or Tasman Island Cruises. Congratulations Amy and thanks very much to Pennicott Wilderness Journeys for supporting Tasmanians with epilepsy.
Benefits of Training
"Probably the biggest benefit of my epilepsy training is the ability to now be able to recognise someone who is affected by epilepsy. Not just the obvious signs of someone having a seizure."
Health Professional, Training Participant
“Enjoy the little things in life because one day you'll look back and realise they were the big things."
The Peanuts Gang. Charlie Brown and Friends
Epilepsy Tasmania is a not-for-profit community organisation improving the quality of life of Tasmanians with epilepsy, and those around them, through education, coordination and support.
