Riana’s experience with epilepsy began at a very early age when her mother noticed some out of the ordinary behaviour.
“I started my journey with epilepsy when I was 3 years old. My Mum would find me grabbing onto objects like I was losing my vision and I would stop still and scream whilst rubbing my eyes. After I got referred to a neurologist for an EEG, they found that I had occipital lobe epilepsy that presents itself in focal awareness seizures. It was hard to get used to going to kindergarten and the start of primary school whilst having these seizures.”
Despite taking a number of anti-seizure medications, Riana’s seizures persisted which resulted in the need for home-schooling as she waited for things to turn around.
“When I was 9, I started having tonic-clonic seizures every day. I tried so many medications, but nothing would take away my tonic-clonic seizures completely. At this point I was having focal awareness seizures every week too. My seizures got so bad that I had to do home-schooling for a little while whilst we waited for things to get better. It took a high dose of multiple medications to make me stable with my tonic-clonic seizures.”
A few years later, Riana received some life changing news regarding her diagnosis and finally found the answers her and her family had been searching for.
“At age 12, my neurologist decided I needed to get a deep brain MRI. It came back showing that I had cortical dysplasia on my occipital lobe. This diagnosis was life changing. I finally found out why these seizures happen to me.”
Continuing with her studies, Riana found a supportive peer network, though her epilepsy slowly became more prominent, initially leaving her neurologist confused but determined to find the cause.
“Fast forward to 19, I was doing a Diploma, had a great group of friends but my focal awareness seizures had started to come back, and slowly progressed from monthly, to weekly, then to daily seizures. My neurologist was stumped but had faith that the medications were going to work. With a lot of trial and error and a couple of EEGs and VEEGs, my neurologist said I was refractory and put in an application for me to be a part of the Australian Epilepsy Project to see where to go next. I am now 21 and will start the testing process for brain surgery on my occipital lobe. I am very fortunate that this is available as an option for me.”
Riana acknowledges that the challenges she faces are not ideal, but refuses to let epilepsy break her spirit. In fact, her strength and positive outlook on life have managed to flip the script. She is rightfully proud of the person she has become because of the challenges she has faced and has every intention of still pursuing and reaching her goals.
“Yes, I wish things were different sometimes, but if it wasn’t for my epilepsy then I wouldn’t be the person I am today, and that person is someone I am proud of. I will never let my epilepsy stop me from achieving my goals no matter how long it takes. I have travelled, got a Diploma, and worked at amazing places. I will never let epilepsy define me.”
Support people living with epilepsy, like Riana, by registering for the Walk for Epilepsy. Visit https://www.walkforepilepsy.org.au/0AC34C to register.