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AEP Participant: Darcey Colvin

June 20, 2024
AEP team member

“I had my first seizure in July of 2022, which was quite extreme. The hospital thought I’d had a stroke at first, as I was unresponsive, not breathing and couldn’t move my limbs.

“I was put on an over-night drip with epilepsy medication and dispatched the next day. I had a seizure as I was leaving the hospital. Since this seizure was within 24 hours of the first, it was considered part of the same initial episode.”
Darcey was prescribed daily medication and didn’t experience another seizure until almost a year later. This seizure led to an epilepsy diagnosis and numerous tests including an MRI and CAT scan. 

“The most difficult part about my epilepsy journey has been losing my driver’s license. You don’t realise how much you take it for granted until it’s gone. Adapting to the seizure medication was also quite difficult, as the side effects were quite intense, effecting my mental and physical state. The first few months were really hard, but I slowly started getting used to it, and I still am to this day.”

Darcey heard about the Australian Epilepsy Project through the hospital and was referred into the study by her treating neurologist. “The information and testing provided was very informative, however, I haven’t yet had a follow-up appointment with my neurologist to discuss the outcome of the test results.

“It [AEP] really teaches you a lot about epilepsy, especially when you get this illness without warning. It throws you in the deep end with no explanation, or education of the illness at all, so it definitely helped me with the process.

"I have also learnt that I have so much support around me, from friends and family, and I am strong, and I won’t let my epilepsy diagnosis define my life."

Darcey and friends at her graduation

 What would you say to others to encourage them to speak to their neurologist about joining the AEP?

“I would say that you learn a lot about the condition [epilepsy], and also about yourself. It’s really educating and quite interesting; you never really learn these things unless it happens to you.” 

AEP Participant: Kylie Staats shares her story

Hi, my name is Kylie Staats, I’m 37 years old and I have had epilepsy for almost my entire life. I had my first seizure when I was four years old, and at that time, nobody knew why it was happening.

AEP Volunteer: Luke Wolfe

Meet Luke Wolfe, a recent volunteer for the AEP’s control group. Earlier this year, his close friend experienced her first seizure and was subsequently diagnosed with epilepsy. Watching her navigate this new diagnosis and its impact on her life left him wondering if there was a more proactive way he could help, other than offering care and support.

Meet the team: Seiko Bhungane

Meet Seiko, a Clinical Trials Assistant with the Australian Epilepsy Project. As a member of the Clinical Trials team, Seiko is responsible for the recruitment of both AEP participants and control group volunteers as well as the follow-up interviews with our three participant cohorts (first seizure, newly diagnosed and drug-resistant). “The first call you get from the AEP and the last one, is done by my team and I.”