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Sarah Watts was just 22 and working on a movie set in Vancouver, when she experienced a tonic-clonic seizure, which is also known as a grand mal seizure.
"I remember waking up briefly at one point and paramedics were there," Sarah Watts.
"Then I passed out again."
Sarah was rushed to a nearby hospital, where she had two more seizures. It took two years before she was diagnosed with epilepsy, one of the most common neurological disorders affecting approximately 350,000 Canadians and 50 million people worldwide.
Today is Purple Day, an international effort every March 26 to increase awareness about epilepsy.
"I was shocked," Sarah says of her diagnosis.
The seizure had come out of the blue. Sarah was under a lot of stress at that time and she hadn't been eating regularly or getting enough sleep. But an epilepsy diagnosis was the last thing she expected.
It began a years-long journey into a healthcare system that she had to learn to navigate.
"For the next few years, I saw many neurologists and tried different types of medications, but nothing worked," Sarah says.
By the time she was 26 and a Masters student at the University of Toronto, Sarah was on several different kinds of medication and still experiencing focal seizures almost every single night. Focal seizures start in one part of the brain and often come with more subtle symptoms, but often with longer-lasting effects.
"I couldn't study, I was like a zombie," Sarah remembers. "It was like 'the lights are on but nobody's home.' I'd come out of the seizures and be so disoriented, confused and frankly, fearful as to why this was happening. It took time to get my bearings again."
Investigating a surgical option
The seizures also took a toll on Sarah's mental health and she began to feel depressed by her situation.
"They were really taking over my life. I was behind in school, I couldn't keep up. I was getting so worried about my future and that just added to the stress."
That's when her neurologist, Dr. Jose Martin del Campo, referred Sarah to see Dr. Taufik Valiante – a Scientist at the Krembil Research Institute and a neurosurgeon at Toronto Western Hospital, whose Neuron to Brain Lab develops tools to understand and ultimately control the electrical properties of the brain – to determine if she was a potential candidate for surgery.
"Her investigations started with a typical non-invasive, pre-surgical workup," says Dr. Valiante. "That included an MRI scan and a video EEG at the Toronto Western Epilepsy Monitoring Unit, as well as neuropsychological testing."
The decision was made to implant electrodes in Sarah's brain, to help doctors pinpoint from which specific part of her brain the seizures were coming.
Like detectives, from the data, they discovered the seizures started in Sarah's right frontal lobe.
"The right frontal lobe takes up about 30 per cent of the brain," Dr. Valiante says. "In Sarah's case, we removed about half of it – slightly larger than a baseball."
The chances of being seizure-free after surgery, depend on where in the brain you operate, according to Dr. Valiante.
"If it's in the temporal lobe, the chance of seizure-freedom is about 75 per cent," he says. "Anywhere outside the temporal lobe, it's about 50 per cent."
The day of the surgery, Sarah remembers feeling "an undercurrent of excitement, overshadowed by nervousness.
"I knew there was no guarantee of success, but I felt ready," she says. "At that point, I was having seizures three, four times a week and I would have done anything to try to make them stop."
Sarah worried as much about the complications of removing part of her brain and the potential impact on her personality, as she did about the surgery.
"I didn't want to stop being me," Sarah says. "I knew that I might not be as intuitive at reading people, that I might get angrier or frustrated more easily, and have challenges with time management and organization.
"But for me, I felt it was worth it, despite the risks."
Many epilepsy patients report feeling a stigma and they are often mistakenly viewed as anti-social, potentially violent or as suffering from mental health issues. That's why Purple Day, an international effort to increase awareness about epilepsy started by Canadian Cassidy Megan, is so important.
"Purple Day helps to combat the isolation that many epilepsy patients feel in their daily lives," Sarah says. "It's so important because it helps people understand what epilepsy is – and not to be afraid of it."
For Sarah, now living back in Vancouver, the surgery has been life changing. She still has yearly follow ups with Drs. del Campo and Valiante and remains on medication as a precaution, but in the 10 years since she had the procedure, Sarah hasn't had a single seizure.
"Sarah is the type of patient who makes you hopeful for every other patient that you see," says Dr. Valiante. "Obviously not everyone will have a similar result, but that's what motivates us.
"That's what keeps us going.
"She was determined to do whatever she could to get on with her life and she never wanted epilepsy to interfere with that."
Do not let the disorder define you
In fact, Sarah has gone on to graduate with two Masters degrees in Theology and Art History and has a job she loves, working in television.
"Had I continued to have seizures, I honestly don't think I would have been able to accomplish that," Sarah says
Her message for other epilepsy patients this Purple Day is not to let the disorder define you.
"People give you almost a condolence look on their face when you tell them," she says. "But there is no reason for people to feel sorry for you.
have epilepsy but you are
not epilepsy, just as someone who has cancer is not defined by cancer."
Despite the success of Sarah's surgery, she takes nothing for granted.
"On the year anniversary of my surgery, I went out and had a nice dinner and celebrated," she says. "But I still say 'knock on wood' all the time.
"I know things can change and so I appreciate every moment."