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Meet the AEP team: Amanda Anderson

February 5, 2024
AEP team member

What is your role at the AEP? Can you explain what it involves.  

I am the Lived Experience Ambassador and Participant Lead. I use my lived experience of epilepsy to guide a lot of what we do at the AEP to make sure it’s participant friendly. I obtain feedback from participants and adjust our processes, where needed. I track our metrics to ensure we are meeting our goals. I have also recently started conducting neuropsychological testing with our participants.

 

Why did you choose to work at the AEP?  

After having successful surgery in 2010 for my refractory epilepsy at the Austin, I wanted to give back to the epilepsy community.

  

What do you hope to achieve at the AEP?  

Give people living with epilepsy access to advanced testing and shorten their journey to seizure freedom.

 

Proudest moment/achievement. Why did this make you feel so proud?

Four years after epilepsy surgery I went back to study but chose to start a Psychology degree instead of finishing my accounting studies. I chose this degree in the hope of getting into a field where I could help people like me, living with epilepsy. Prior to surgery, I had dropped out of my accounting studies at Monash University as my memory was becoming an issue whilst also experiencing many seizures. I never thought I would be able to go back to university, so that is why I’m so proud of this achievement.

 

All-time favourite meal?  

Mexican. I love a bit of spice and cheese.

 

Current streaming recommendation?

Boy Swallows Universe on Netflix. I loved the book by Brisbane author, Trent Dalton and the series was fantastic, too.

 

Current book you are reading?

I’m reading Trent Dalton’s new book, Lola in the Mirror - another great read of his.

 

What advice would you give your 12-year-old self?

This is a hard one. Would I let myself know about all the struggles I would go through with my health? I probably would say, ‘things will get tough, but you will get through anything thrown at you and will come out stronger.’

 

Who would you most like to meet, or have met? And why?

I love a good laugh and thoroughly enjoy Ricky Gervais’ work, especially the series, Afterlife. So, I would love to meet him. [Ricky Gervais - Wikipedia]

 

Finish the following sentences:

My ideal weekend involves…

Hanging out with my family, catching up with friends and a sleep-in. My kids are now 10 and 16, so I can enjoy sleep-ins after many years of early mornings.

 

I believe the most important thing in life is…

being happy and healthy.

 

AEP Participant: Darcey Colvin

Darcey was diagnosed with epilepsy about 12-months ago after what seemed like an extremely long year of testing with no results. She recently participated in the Australian Epilepsy Project to gain access to advanced testing (imaging, cognition and neuropsychology), testing that is not normally available as a part of standard care.

John Hoyne shares his epilepsy story

John Hoyne experienced his first seizure at 47. Diagnosed with late-onset epilepsy and struggling to understand why me, and why now, lead him to embark on a mission to provide resources and support for others facing a similar life-path.

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