Epilepsy is the world's most common serious brain disorder and is characterised by a tendency to have recurrent seizures. A seizure is the physical sign that there has been a disruption to the normal functioning of the brain. Most seizures are spontaneous and brief yet self-limiting and can involve loss of consciousness, a range of unusual movements, odd feelings and sensations or changed behaviour.

Increased community awareness and understanding of epilepsy can reduce its impact on those who are diagnosed with this condition.

These Speaking from Experience clips feature seven young people talking about the impact that Epilepsy has had on their lives.

Acknowledgements

Video 2018 © Copyright Healthily Pty Ltd
Taylor - We didn’t know what it was at first because it was such a weird thing for our family. No-one had ever experienced it before.

Chris (Alix’s Father) - Well, we thought Alix was a daydreamer, living in her own little world, um, which didn’t seem a bad thing at the time. But then the daydreaming started to happen when Alix was in dangerous situations crossing roads. And she got to the age where she was able to start to cross the roads on her own. And she’d only get halfway over and stop and have a little a little moment to herself. (LAUGHS)

Sian - When I was in year seven, I started having myoclonic jerks um, because I was dropping things, um, sometimes, er, falling over without knowing why. And, um, yeah, these were later identified as myoclonic seizures.

Daniel - Mum and Dad took me to who I needed to see about it and they, like, gave me some EEGs and all that. And I found out that I had epilepsy.

Patrick - I was diagnosed with epilepsy when I was… from an infant, basically. But that’s… I stopped taking medication when I was about eight years old, when we came back over to Australia from Bahrain. And, um, I was off medication for about five, six years and then I had a relapse just last year.

Alison - I was diagnosed when I was 12 years old. But I remember having my first seizure when I was eight.

Taylor - I was diagnosed at, I think, age 12, um, after multiple tests and, er, a lot of, like, um, visits to the doctor.

Cassandra - I was eight and a half months old when I was diagnosed with epilepsy.

Alison - I was at home when I had the tonic-clonic seizure. So luckily my dad knew what to do. And then I was rushed to the hospital because this was the first time it happened. And, um, the doctor on… at Emergency, he said that I have epilepsy.

Patrick - Well, the first time I had a seizure I didn’t really know what it was because I hadn’t had one for such a long time. So I didn’t really tell anyone. And...but then it happened again and obviously I had to do something about it. So I contacted a neurologist and, yeah, we started from there.

Chris (Alix’s Father) - Help from a friend who was in the medical profession, um… who, sort of, alerted us to the fact that epilepsy wasn’t just having large fits, that there were various versions of it that we knew nothing about at that stage.

Taylor - I knew absolutely nothing at all. I didn’t even know what it was. Yeah, I didn’t even know it existed.

Sian - It’s very...very terrifying to have your life changed in an instant. To say one minute you are normal and then the next minute you’re, I suppose, different. Like, you know, it’s very… it’s very altering, life-altering. Um, yeah, I saw myself a bit differently too, so it took a while for me to accept the change as well.

Daniel - I didn’t feel that bad. I didn’t take it, like, seriously. I just took it as an, “OK, just don’t do much… “Like, don’t push yourself too hard or anything like that.”

Alison - I reckon I was probably relieved, if anything, because so many doctors had been saying that I was making it up or we just couldn’t find anything. But in a way I also felt like I was, you know, some sort of weird, ‘one-of’ sort of person. But, um… yeah, it was probably better that I was diagnosed then and put straight onto a medication.

Content Partner

This page has been produced in consultation with and approved by: healthily-epilepsy-foundation

Last updated: June 2018

Content on this website is provided for information purposes only. Information about a therapy, service, product or treatment does not in any way endorse or support such therapy, service, product or treatment and is not intended to replace advice from your doctor or other registered health professional. The information and materials contained on this website are not intended to constitute a comprehensive guide concerning all aspects of the therapy, product or treatment described on the website. All users are urged to always seek advice from a registered health care professional for diagnosis and answers to their medical questions and to ascertain whether the particular therapy, service, product or treatment described on the website is suitable in their circumstances. The State of Victoria and the Department of Health & Human Services shall not bear any liability for reliance by any user on the materials contained on this website.