'Moments by Seer' logo.

6 unique stories from people touched by epilepsy

Moments by Seer is an interview series seeking to spread awareness about epilepsy.

Epilepsy is a neurological disorder that affects at least 50 million people worldwide. Not only is it one of the world’s oldest recognised conditions, but, today, it still remains misunderstood, discriminated against, and life-threatening. Moments by Seer was filmed to help change all this – to spread awareness, educate the public, and break the stigma.

Through six interviews, we explore how epilepsy impacts and affects people differently and what we can do to help. If society has a basic understanding of this, then we can help normalise the lives of those living with epilepsy.

We will upload one interview, each week, starting February 2, 2021.

 

Photo of Petra and text on image ('Meet Petra')

You never know which new experiences will trigger a seizure.” – Petra

Petra was diagnosed with epilepsy as a child and experienced tonic-clonic seizures. This type of seizure is what most people think of when they think about a seizure – a person loses consciousness, muscles stiffen, and the body jerks uncontrollably.

Fortunately, Petra has been seizure-free since 2007. However, like with many other people living with the neurological condition, Petra struggles with the unpredictable nature of seizures.

Petra is sharing her story to help others understand what epilepsy is about, strengthen society’s awareness about epilepsy, and help end the stigma and misconceptions that often are associated with it.

Everyone’s experience with epilepsy is different. This is Petra’s story.

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Photo of Kate and text on image ('Meet Kate')

If you don’t laugh about it, you’ll cry.” – Kate

Kate was diagnosed with epilepsy at a difficult time in her life – she was going through chemotherapy for Hodgkin’s lymphoma when she had her first seizure in a restaurant. Kate’s perseverance and strength throughout this time in her life is truly inspiring. She is now cancer-free and manages her epilepsy with medication.

Kate is sharing her story to help others understand what epilepsy is about, strengthen society’s awareness about epilepsy, and help end the stigma and misconceptions that often are associated with it

Everyone’s experience with epilepsy is different. This is Kate’s story.

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Photo of Brendan and text on image ('Meet Brendan')

Where you can, trust yourself and listen to your body.” – Brendan

Brendan has juvenile myoclonic epilepsy (JME). People with this type of epilepsy experience myoclonic seizures and, more often than not, tonic-clonic seizures.

Brendan manages his epilepsy by avoiding seizure triggers such as stress, alcohol, and lack of sleep. You can easily imagine how difficult avoiding these triggers could be for adolescents growing up and just wanting to live a normal life like their peers – but for many people living with epilepsy, this is the reality.

Brendan is sharing his story to help others understand what epilepsy is about, strengthen society’s awareness about epilepsy, and help end the stigma and misconceptions that often are associated with it

Everyone’s experience with epilepsy is different. This is Brendan’s story.

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Photo of Fiona and text on image ('Meet Fiona')

“It’s so nice to meet someone who knows what it’s like.” — Fiona

Meet Fiona. Fiona’s husband, Rodney, has epilepsy and she is here to tell us how epilepsy has impacted her, as a carer, and partner. Together, Fiona and Rodney have navigated many challenges – explaining epilepsy to their son and learning how to educate employers that don’t understand seizures were two obstacles that they faced.

“It’s so nice to meet someone who knows what it’s like.” A significant moment on Fiona’s journey was when she met a woman with epilepsy at her son’s gymnastics class. To communicate with someone who understood epilepsy on a deeper level made the world of difference for Fiona. However, if society was more educated about epilepsy and if there was less of a stigma attached to it, then perhaps she could have shared this moment, or something alike, with someone sooner.

Epilepsy organisations and support groups play an important role in connecting people affected by epilepsy – Fiona reached out for advice and highly recommends it to others too.

Fiona is sharing her story to help others understand what epilepsy is about, strengthen society’s awareness about epilepsy, and help end the stigma and misconceptions that often are associated with it. Support her by sharing this story with someone who might not know a lot about epilepsy – one share can make a big difference.

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Photo of Mickey and text on image ('Meet Mickey')

“Don’t let anything get in the way of doing what you want to do.” — Mickey

Meet Mickey. Mickey has juvenile myoclonic epilepsy (JME) which is a fairly common epilepsy syndrome occurring in approximately 5-10% of people with epilepsy. If you’re looking for a little motivation or inspiration, Mickey is someone you want to hear from – his optimistic attitude is contagious and it has helped him get to where he is today.

Today, Mickey is a small business owner, he passionately promotes learning seizure first-aid amongst his employees, and everyday he strives to live his life unrestricted by epilepsy.

Mickey is sharing his story to help others understand what epilepsy is about, strengthen society’s awareness about epilepsy, and help end the stigma and misconceptions that often are associated with it. Support him by sharing this story with someone who might not know a lot about epilepsy – one share can make a big difference.

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Photo of Melissa and text on image ('Meet Melissa')

“It’s a minefield, you’ve got to be patient.” — Melissa

Meet Melissa. Melissa’s son, Joshua, has Dravet syndrome which is a rare and lifelong form of epilepsy that begins in the first year of life. Issues that are often associated with this form of epilepsy include more frequent seizures, behavioural and developmental delays, and movement and balance issues.

Raising a child with a chronic medical condition like Dravet syndrome is incredibly challenging – a caregiver may need to find more flexible work or even quit work, and ordinary activities like visiting the park or even friends, can be difficult or impossible depending on the severity of one’s condition. In addition to this, the current treatments available to people with Dravet syndrome only offer limited control.

Amidst all the challenges, Melissa and her family have many moments with Joshua that they are grateful for. A seizure-free week, making friends at kindergarten, or a trip to the park are wonderful blessings.

Melissa is sharing her story to help others understand what epilepsy is about, strengthen society’s awareness about epilepsy, and help end the stigma and misconceptions that often are associated with it. Support her by sharing this story with someone who might not know a lot about epilepsy – one share can make a big difference.

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Help spread awareness and end the stigma

Moments by Seer was designed to be shared. There are messages for people with and without epilepsy in these interviews.

You can help make a big difference by sharing these ‘Moments’ with your network. 

Thank you to the following epilepsy organisations for your support. If you need advice or support related to epilepsy, reach out to your local epilepsy organisation here.

 

Logos of epilepsy foundations.