Good morning, everyone.
As Madam Chair mentioned, my name is Sarah Ward. I'm here to speak to you today about why I'm such a huge supporter of the Purple Day initiative.
I'm currently a first-year medical student at the University of Ottawa, and prior to my studies here in medicine, I was at Dalhousie University in Halifax, working on my master's project in medicinal chemistry.
It just so happened that my assigned project was specifically focused on the design and synthesis of antiepileptic drugs. Prior to my graduate studies, like the majority of the population, I didn't really know a lot about epilepsy or what it would be like to live with the disorder, and I soon became aware of just how little I knew when I started doing the background reading for my project. I also realized that a lot of what I thought I knew was actually wrong.
My project piqued my interest in the subject, and I soon felt compelled to get out there and become more involved, so I started volunteering at the Epilepsy Association of Nova Scotia. I went there and I met with Iris. She found the perfect position for me; as a volunteer, I ended up working with the fun club, which is a social group for people with epilepsy. It allows them to meet other people with epilepsy and experience activities in the city that they otherwise might not be able to afford.
I had the chance to work closely with many of the members there who have epilepsy. They're a very inspiring group, and they're actually a big part of why I ended up applying to medicine. I was also involved with a number of fundraising efforts there, and I eventually became a general member of the EANS board of directors.
I don't have epilepsy and I can't give you a first-hand account of what it would be like to live with the disorder, but hopefully through my research experiences and my time at the EANS, I can convince you that having an official day for epilepsy awareness would have an immensely positive outcome.
I know these statistics were already mentioned, but I think they're worth mentioning again, because they're very important and impressive: epilepsy affects 0.5% to 1% of the population, which translates to approximately 50 million people worldwide, and as Mr. Regan mentioned, there are more people with epilepsy than there are with cerebral palsy, Parkinson's, MS, and muscular dystrophy combined. It's an impressive figure. It's quite a common neurological condition.
Interestingly enough, the word “epilepsy” is derived from the Greek word “epilepsia”, which literally means “to be seized or taken hold of”. This demonstrates the once-popular belief that seizures were a result of demonic possession or punishment from the gods. This isn't a common belief today, but I think there is a significant amount of stigma still associated with the condition.
For example, members of the adult population often have a negative image of epilepsy because it's sometimes incorrectly associated with mental health issues or anti-social issues, or even with violent tendencies. I think, in most cases, the stigma concerning epilepsy arises simply from ignorance. People fear what they don't know, so I think having a day designated to raising awareness about epilepsy would certainly help fix this problem.
Furthermore, I think Purple Day would also make individuals who have epilepsy feel much more accepted. I think it would provide them with a sense of belonging and a sense of empowerment. I think it would make them feel more comfortable with being open about their condition and perhaps even encourage them to become spokespeople within their own community, thus increasing awareness further.
Not only would Purple Day improve the psychological health of individuals with epilepsy, but I think it would also really benefit their physical health. Educating the public on proper first aid techniques would debunk some of the potentially harmful myths surrounding seizure first aid. For example, despite what many people think, it is physically impossible to swallow your tongue, even if you are having a seizure, so don't stick anything in someone's mouth while they're in a seizure; if you do, you could actually cause them to chip their teeth or choke.
That's just one example; there are many. Something I wasn't aware of, which I think is very important for the public to know, is that if a seizure lasts longer than five minutes, you should call 911, because a prolonged state of seizure, also known as status epilepticus, can cause permanent brain damage and even death.
I also think educating the public on the clinical manifestations of seizures is very helpful, because it can result in earlier recognition and diagnosis and, consequently, earlier treatment and control of seizure disorders.
Again, contrary to popular belief, seizures don't always involve the typical convulsions that you see on TV shows like House or Grey's Anatomy. As has already been mentioned, this is only one type of seizure; it's known as a generalized tonic-clonic seizure, but there are many other types, many of which don't involve convulsions. For example, a seizure type that's common in children that often goes undiagnosed for a long time is the absence seizure. It can manifest as simply a blank stare and can be accompanied by absent-minded movements like picking at clothing or chewing. As you can see, this could often mistakenly be dismissed by parents or teachers as daydreaming. I think these facts are important for the public to know.
Lastly, I believe that Purple Day would also promote more public participation in epilepsy organizations. In the same way that I decided to volunteer for the Epilepsy Association of Nova Scotia because of my exposure to the disorder through my master's research project, I think that increased public awareness may too encourage other people and the public to become more involved.
Just as importantly, I think it would promote more public donations to various epilepsy-related causes. I know more funding would definitely be beneficial on the research front. Over one-third of individuals with epilepsy are actually unable to control their seizures with medication, and those who do often experience many awful side effects. Much about epilepsy is still unknown, so research is certainly still needed.
Additionally, more funding for organizations like the CEA or like the Epilepsy Association of Nova Scotia would also be extremely beneficial. I've seen what these organizations can do. They have wonderful outreach programs. They provide immense support for individuals and families affected by epilepsy. They've improved the lives of a great many people with this condition, so more funding for them would allow them to expand and just do that much more.
In conclusion, I think that government endorsement of Purple Day is advantageous in many ways. Passing this bill would be a very great step forward. Thank you very much for letting me speak.