13 episodes

Epilepsy is something most people don't talk about much.

It's something many of us don't understand and - to be honest - the thought of someone having a seizure freaks us out a little bit.

Epilepsy Tasmania wants to change that - and help people who have no experience of the condition to understand what it's all about, to demystify it and in turn help make life better for people who are affected.

We have released the My Journey Podcast for Purple Month 2020; a worldwide grassroots campaign aimed at getting people talking about epilepsy, reducing the stigma, and helping those affected live full and happy lives.

To find out more, go to epilepsytasmania.org.au.

My Journey from Epilepsy Tasmania Sam Ikin

    • Health & Fitness

Epilepsy is something most people don't talk about much.

It's something many of us don't understand and - to be honest - the thought of someone having a seizure freaks us out a little bit.

Epilepsy Tasmania wants to change that - and help people who have no experience of the condition to understand what it's all about, to demystify it and in turn help make life better for people who are affected.

We have released the My Journey Podcast for Purple Month 2020; a worldwide grassroots campaign aimed at getting people talking about epilepsy, reducing the stigma, and helping those affected live full and happy lives.

To find out more, go to epilepsytasmania.org.au.

    Purple Day

    Purple Day

    Social Distancing measures in the face of the COVID-19 threat forced us to cancel our public Purple Day events. Instead, we did a live version of My Journey, which we streamed on social media. Our guests included Epilepsy Tasmania CEO Wendy Groot, Neuroscientist Lila Landowski, Dr Tim Jackson from the Royal Australian College of General Practitioners, Epilepsy Tasmania's social worker Shirley Poetschka and an extraordinary appearance from entertainer Colin Dean.

    Most people don't like to talk about epilepsy, but about one in five of us are affected by it, directly or indirectly. Despite this, there is still a seemingly immoveable stigma surrounding the condition.

    Epilepsy is far more than just seizures, and we hope these stories will give you an insight into this.

    Epilepsy is a common brain condition that takes the form of recurring seizures. It can develop at any age, regardless of ethnicity or gender.

    • 30 min
    Hannah

    Hannah

    Hannah is a second-year medical student who faces her own medical mystery. A few years ago, she started having uncontrollable and unexpected convulsions which, to most people with any experience of it, appeared to be epileptic seizures. But doctors say she doesn't fit the criteria to be someone affected by epilepsy.

    With a definitive diagnosis, Hannah can't take medication, so her condition can't be controlled. The constant uncertainty that she could have another episode at any time is having a profound effect on her life.

    This episode is the story of how Hannah and her mother Jenni (from episode 10) are determined to work out what is causing Hannah's condition and how the uncertainty is affecting their lives.
    Most people don't like to talk about epilepsy, but about one in five of us are affected by it, directly or indirectly. Despite this, there is still a seemingly immoveable stigma surrounding the condition.

    Epilepsy is far more than just seizures, and we hope these stories will give you an insight into this.

    Epilepsy is a common brain condition that takes the form of recurring seizures. It can develop at any age, regardless of ethnicity or gender.

    • 8 min
    Jenni

    Jenni

    After noticing a student having a seizure during a lunch break, Jenni, a teachers assistant, has played a leading role in making sure all teachers were trained in epilepsy first aid. Her story and her experience with seizures are not just from her work.

    A few year's ago, Jenni's daughter, Hannah, started having uncontrollable convulsions. Having had some experience of epilepsy, Jenni was sure Hannah was affected by the condition and sought the advice of doctors in the hope of finding a preventative medication. However, the experts said Hanna's convulsions don't match the criteria for epilepsy, and they're not sure what is causing her convulsions.

    Most people don't like to talk about epilepsy, but about one in five of us are affected by it, directly or indirectly. Despite this, there is still a seemingly immoveable stigma surrounding the condition.

    Epilepsy is far more than just seizures, and we hope these stories will give you an insight into this.

    Epilepsy is a common brain condition that takes the form of recurring seizures. It can develop at any age, regardless of ethnicity or gender.

    • 9 min
    Glenda

    Glenda

    Glenda is the devoted grandmother of seven year old Laila. She was there for her birth and has played a crucial part in her life, despite the fact that they live on opposite sides of the country.

    Laia was diagnosed with epilepsy when she was 9-months-old and later with Dravet Sydnrome, a severe form of the condition. She has been in and out of hospital more times than Glenda cares to talk about and is always ready to make the trip from Hobart to Perth to be with her granddaughter.

    Glenda has taken an active role in raising awareness of epilepsy and want's to do all she can to break the stigma and help people like Laila live full and happy lives.

    Most people don't like to talk about epilepsy, but about one in five of us are affected by it, directly or indirectly. Despite this, there is still a seemingly immoveable stigma surrounding the condition.

    Epilepsy is far more than just seizures, and we hope these stories will give you an insight into this.

    Epilepsy is a common brain condition that takes the form of recurring seizures. It can develop at any age, regardless of ethnicity or gender.

    • 10 min
    Jules

    Jules

    Jules has been affected by epilepsy since she was a kid and it's just been part of her life for as long as she can remember and she thought he daughter Annabelle would have the same experience. But Jules and her family were devastated when she lost her daughter to SUDEP.

    SUDEP is the sudden, unexpected death of a person affected by epilepsy. Every day someone in Australia loses their life as a result of epilepsy and half of those are a result of SUDEP.

    Jules now sits on the board of Epilepsy Tasmania and has resolved to do all she can to help others affected by epilepsy and to raise funds for epilepsy research. This episode is devoted to her story.

    Most people don't like to talk about epilepsy, but about one in five of us are affected by it, directly or indirectly. Despite this, there is still a seemingly immoveable stigma surrounding the condition.

    Epilepsy is far more than just seizures, and we hope these stories will give you an insight into this.

    Epilepsy is a common brain condition that takes the form of recurring seizures. It can develop at any age, regardless of ethnicity or gender.

    • 8 min
    Derek

    Derek

    Derek had his first seizure at the age of 60 and was diagnosed with epilepsy shortly after. He's a man who loves the outdoors and competed in shooting and fly fishing. But since he started having seizures he has had to find enjoyment in the simple things.

    Derek says stress can bring on a seizure so he's simplified his life and has taken a "don't sweat the small stuff" approach to life.

    Most people don't like to talk about epilepsy, but about one in five of us are affected by it, directly or indirectly. Despite this, there is still a seemingly immoveable stigma surrounding the condition.

    Epilepsy is far more than just seizures, and we hope these stories will give you an insight into this.

    Epilepsy is a common brain condition that takes the form of recurring seizures. It can develop at any age, regardless of ethnicity or gender.

    • 10 min

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