By: Michelle Wilson, Communications Lead at the Ontario Brain Institute
It's easy to take for granted that the whole of our consciousness is rooted in nothing more than the complex activity of our brain cells. It's only when activity goes awry that the importance of our immaculately-tuned brain activity becomes obvious.
A seizure is caused by something like a neurological short circuit, resulting in a wide variety of unintended unusual sensations and behaviours. When a person's brain regularly goes into uncontrollable seizure, the resulting condition is a brain disorder called epilepsy.
We have come a long way in understanding epilepsy since the ancient Greeks' interpretation of a seizure as divine intervention. Even still, while many researchers are studying epilepsy, the public largely misunderstands the condition. In an effort to advance knowledge and understanding, the Ontario Brain Institute (OBI) has formed a program uniting diverse experts to work towards the common goal of providing better treatments and care for individuals with epilepsy. From our conversations with the doctors, researchers, drug developers, and patient advocates who are part of this program, here are five things they believe people should know about epilepsy:
1. Epilepsy is more common than you may think
Epilepsy is the 4th most common neurological condition."People may not understand how common epilepsy is. Because it tends to be a disorder that's still in the shadows and not spoken about, people don't realize that there are so many Canadians living with epilepsy," says Susan Harrison from the Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario. Epilepsy does not discriminate by age, and is also very prevalent in children. Dr. Danielle Andrade, a neurologist at the University Health Network in Toronto says "epilepsy is the most common neurological disease affecting young people. Some children grow out of epilepsy but many of them continue to experience seizures into adulthood."
2. Epilepsy doesn't just affect the individual
The disorder also affects the lives of those who are close to someone living with epilepsy. As Ron Gonzalez, Vice President of Business Development at Avertus, explains "people may not be aware of the full extent of the hardship and the burden that people with epilepsy and their families go through if they don't have proper support. Part of the process is educating the public in terms of the needs of people with epilepsy."
The lack of education and public understanding presents enormous obstacles for people living with epilepsy. Taufik Valiante, a neurosurgeon at the University Health Network in Toronto states "the thing people should know about epilepsy is that one of the most debilitating aspects of it is stigma. And with all the research, and medication, and technologies that we want to create there are some very holistic things that we can do for people with epilepsy and probably the most important and easily implementable thing is awareness and understanding."
3. Seizures can be unpredictable
Imagine never knowing when you might lose control of your body. Mary Secco, from the Epilepsy Support Centre in London, Ontario thinks people need to know how frightening seizures can be: "I think people should know how scary it is to live with the unpredictability of seizures. It's really difficult to worry that you could have a seizure in the next hour or the next day, the next month, or the next year. I'm not sure that people understand the emotional impact that epilepsy has on the affected person." There are many different types of seizures, and each person with epilepsy will experience their own in a way that is unique to the individual.
4. Drugs don't always work
The drugs used for epilepsy are designed to treat only the symptoms of disorder, not the root cause. Dr. Andrade points out that "the medications we have today serve as a means to treat the seizures, the same way you might give a person Tylenol to treat a fever but it doesn't treat the actual cause ... it's difficult to address what's actually going wrong." Furthermore, Dr. Andrade explains that "while two-thirds of people respond to treatment, there is still a third that cannot be treated successfully with medication alone."
5. Epilepsy research is booming
In 2013, over 140,000 research papers were published on epilepsy worldwide -- and, among that, the work being done in Ontario is uniquely positioned to make a large difference in the lives of those with epilepsy. The OBI's epilepsy research program ("EpLink") is in the process of developing new drugs, lifestyle-based therapies and neurotechnology for the treatment of epilepsy. "There is plenty of research going on into epilepsy at the moment and there's plenty of hope for new treatments for anybody and everybody with this condition," says John Andrews, President of Ketogen Inc., an Ontario based-pharmaceutical company focused on developing a new drug to treat epilepsy.
The common thread among these "5 things you need to know" is that by simply opening a discussion about epilepsy we are collectively making strides forward to unpack and demystify this once enigmatic brain disorder.
About the Ontario Brain Institute:
The Ontario Brain Institute is a provincially-funded, not-for-profit research centre seeking to maximize the impact of neuroscience and establish Ontario as a world leader in brain discovery, commercialization and care. We create convergent partnerships between researchers, clinicians, industry, patients, and their advocates to foster discovery and deliver innovative products and services that improve the lives of those living with brain disorders.