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Imagine living with epilepsy at 14 years old

Fourteen year old Emily thought something was wrong when her mind would become fuzzy during class. She would ‘zone in and out’ and found it impossible to concentrate.

“I mentioned this weird feeling to my parents and they thought it was much more serious than I did,” Emily said.

Emily was referred to a neurologist who diagnosed her with Focal Dyscognitive Epilepsy, a form of epilepsy which affects a person’s ability to focus. Seizures appear as confusing episodes which leave sufferers unresponsive, confused and unable to communicate. Emily suffered from one of these seizures every one to three days.

“When I was having a seizure I couldn’t comprehend what anyone was saying,” Emily says.

“I would become really confused and overthink things. My memory was really badly affected and it impacted my school work; my grades began to fall. I had to leave the academy I was studying at in order to complete Year 12.”

Emily is just one of the 250 000 Australians currently living with epilepsy. The chronic disorder can greatly impact a sufferer’s quality of life, affecting their ability to study, work or drive. A large percentage of people who suffer from epilepsy are unresponsive to medication and require surgery to treat their illness.

After she was diagnosed, Emily tried a number of different medications to help control her epilepsy, none of which worked. In January of 2017, Emily’s neurologist told her that it was extremely unlikely she would ever live a life free of seizures.

Emily’s parents refused to take no for an answer and spent a lot of time researching their daughter’s condition. During their research they came upon a number of positive stories about Mater Epileptologist Dr Sasha Dionisio and his work in changing the lives of people with epilepsy.

Emily’s father Brian sent Dr Dionisio an email and explained his daughter’s condition. Within an hour of sending the email, Brian received a call from Dr Dionisio who asked to see Emily the following Monday.

“From the moment I first walked into Sasha's rooms he was so welcoming and kind,” Emily says.

“He asked me to recite my whole story, so I told him everything I’d experienced. Then he sat my parents and I down and explained what he had planned for us. He wanted to start my treatment as soon as possible and he put me on a number of medications that actually worked,” Emily says.

“It was a huge relief for myself and my parents. We finally had a way forward.”

Emily began attending regular appointments at Mater Centre for Neurosciences. As part of her treatment plan, Dr Dionisio prescribed Emily a Stereotactic EEG (SEEG). This highly specialised procedure involves inserting tiny electrodes into a patient’s brain to monitor activity. The SEEG procedure is used to locate the precise location of a person’s epileptic seizures. This information then enables doctors develop more precise treatment options. Mater is one of only two hospitals in Australia that offer the SEEG procedure.

According to Mater Epileptologist Dr Dionisio, the SEEG procedure enables doctors to study areas of the brain that are otherwise inaccessible.

“The tiny electrodes of the SEEG enable us to record very small areas of brain tissue for activity, allowing us to see exactly where the epileptic seizures are occuring,” he says.

“This means that if a patient’s epilepsy is found to be operable, we can look to remove the affected areas of the brain with greater precision.”

As part of her preparation for the procedure, Emily was required to shave her head, and decided to raise money for epilepsy research in the process.

“We shaved my head in November, the day before I went into hospital,” Emily says.

“My Mum is a professional hairdresser and she cried more than I did. I wasn’t too worried about losing my hair, but my best friend came to support me and when I saw her standing there crying, that made me cry,” she said.

Emily raised $2700 for epilepsy care and research at Mater and went in for surgery the next morning. She spent the next 11 days undergoing her SEEG procedure at Mater Centre for Neurosciences, where she was closely monitored by Dr Dionisio and his team.

“The surgery wasn’t too scary, but being stuck in bed with electrodes inside my brain and a bandage over my head with very limited movement was really scary,” Emily says.

“I had a constant headache from where the electrodes had been drilled into my skull, but I was just so grateful to be getting some answers.”

Thankfully the SEEG procedure was a success and Dr Dionisio and his team were able to pinpoint the location of Emily’s seizures. Emily is now undergoing further testing before she meets with her medical team to discuss the option of surgery.

“The care I’ve received at Mater has already made a massive change to my life,” Emily says.

“It has made a world of difference to know that I have a pathway forward and I’m receiving the best possible care for my epilepsy,” she said.

Emily is currently studying Justice at University and hopes to study Criminal Law.

“I’m really looking forward to getting my life back on track,” Emily explains.

“And I can’t wait to get my drivers license; my baby sister got hers before me!” she says with a smile.

Thanks to the care she received at Mater Centre for Neurosciences, Emily is now looking forward to leading a normal life. Your support in the Mater Prize Home lottery is helping to save lives.

Your support of the Mater Prize Home lottery is helping to provide specialist care for stroke, epilepsy, neurosurgery and neurology patients at Mater Centre for Neurosciences. You can help patients like Emily by purchasing your tickets today.

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