I experienced my first seizure early 2021. I have been fortunate to not have any further seizures, so have not been diagnosed with epilepsy. However, there were concerns that I may have neurological or cardiac-related issues post the seizure, as I have a family history of sudden unexplained death.
I was delighted to be recruited into the Australian Epilepsy Project (AEP) by the Florey’s first seizure clinic. I have studied psychophysiology, health sciences and worked as an EEG technician and research assistant, so it felt natural to want to give back and support other research projects.
I found the testing extremely interesting - it was my turn to be the guinea pig! The researchers and technicians were very friendly and were happy to answer any questions I had.
If I’d had to pay out of pocket for the testing included in the AEP, I probably would not have had the procedures at all. It was reassuring to know that despite no formal diagnosis or explanation for my seizure, all avenues have been looked at, and I am happy knowing my data could possibly help benefit others in some way, in the future.
What would you say to encourage others to sign up as participants? Seizures (whether it’s one, some or many) can really affect a person’s quality of life. The more people living with epilepsy that participate in the AEP, the richer the data, and the better the care and treatment outcomes that will result. So do it for science :)
OJ is a valued member of the Australian Epilepsy Project's clinical trials team - the team that onboard our participants to the study and work with them throughout their AEP journey. OJ is passionate about creating change in healthcare and to contributing to epilepsy research.
Meet Jodie Chapman, one of the Australian Epilepsy Project’s Neuropsychology Research Assistants. She is a Doctor of Psychology (Clinical Neuropsychology) and is passionate about understanding the impact mood and cognitive changes have on a person’s wellbeing.
Vicky He’s research uses MRI (Magnetic Resonance Imaging) to map the location of brain functions. One example of how this works is when asking someone to perform a task such as indicating whether words rhyme - the MRI is able to show which parts of the brain are active during the task.
For the Australian Epilepsy Project (AEP) the pandemic prompted transition from traditional face-to-face neuropsychology testing to teleneuropsychology (TeleNP), enabling continued safe operations during the pilot phase of the study.