Evidence of meeting #29 for Health in the 41st Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was purple.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Iris Elliott  Executive Director, Epilepsy Association of Nova Scotia
Aurore Therrien  Member of the Board Directors, Executive Director, Épilepsie Montréal Métropolitain, Canadian Epilepsy Alliance
Sarah Ward  As an Individual

8:45 a.m.

Conservative

The Chair Conservative Joy Smith

I call the meeting to order.

Good morning, everybody. Welcome to the committee.

We're very pleased to have this very important bill before us. Pursuant to the order of reference on Friday, February 3, 2012, Bill C-278, an act respecting a day to increase public awareness about epilepsy, is what we're going to be putting through today.

Before we do that, we have a couple of things to do.

The first thing we're going to do is hear from our witnesses. One of our witnesses today is the Honourable Geoff Regan, from Halifax West. Mr. Regan, we're very happy to have you on the health committee this morning. Welcome.

From the Canadian Epilepsy Alliance, we have Madame Aurore Therrien, a member of the board of directors and executive director of Épilepsie Montréal Métropolitain. Welcome; we're very glad that you're here.

From the Epilepsy Association of Nova Scotia, we have Ms. Iris Elliott, and she is with us via teleconference this morning. Welcome. Can you hear me?

8:45 a.m.

Iris Elliott Executive Director, Epilepsy Association of Nova Scotia

Yes, I can.

8:45 a.m.

Conservative

The Chair Conservative Joy Smith

When we go to questions and answers, Ms. Elliott, raise your hand so I know that you want to make a reply or ask a question, okay? You're on big screens here and we can see everything, but sometimes we get quite interested in our topics, and I might miss you.

We also have, as an individual, Ms. Sarah Ward. Thank you so much for joining us today.

We will begin with a ten-minute presentation by Mr. Regan.

8:45 a.m.

Liberal

Geoff Regan Liberal Halifax West, NS

Thank you very much, Madam Chair, and I thank the members of the committee.

I must say that I was delighted and surprised, even shocked, at how quickly after passing second reading the bill was able to come before this committee, so I really appreciate the committee giving its time to this bill so quickly.

I'm also delighted to be here with three witnesses who know much more about this topic than I do. I expect they may get many more questions than I will, but I'll do my best, obviously.

It is a pleasure to be here. It's strange to be on this side of the table as a witness rather than among my colleagues. I am very grateful for the support that you, Madam Chair, and your colleagues, as well as all members of the House, have shown for Bill C-278. I think it's a great example of how members of Parliament from all parties can come together, put our partisan interests aside, and push for a bill that has an impact on a policeman in Ottawa, a dad in Edmonton, or a little girl in my riding.

In 2008 nine-year-old Cassidy Megan founded Purple Day for epilepsy and started a global trend. I understand that she's actually listening today by radio, so hello, Cassidy.

Purple Day is now recognized in 47 countries; Canada has really been a leader in epilepsy awareness. I'm pleased to hear, and I'm sure you also will be, that other legislatures such as the State of New Hampshire and others around the world are following this with Purple Days of their own. I understand that Purple Day is celebrated in more than 60 countries, and I'm sure we'll hear more about that later.

I think we owe a great debt to Cassidy. I wouldn't be here today without her vision and dedication. In fact, for me it's just a coincidence that she happens to be in my riding. That's really the only reason I'm associated with this initiative. I'm very happy to be associated with it, but obviously it is she who deserves the credit. Bill C-278 is a direct result of her commitment to this cause and of her imagination, as a nine-year-old, to think, “Why shouldn't I start something like this?” Now look at it: it's in over 60 countries in the world. Isn't that remarkable? What a great and inspiring story that is.

This bill is a pretty simple act, as you know. Bill C-278, I think, will help increase public awareness about epilepsy.

The bill will officially designate March 26 as Purple Day in Canada and will ask Canadians to wear purple clothing. Purple Day is not a legal holiday, but it touches a lot of lives.

Epilepsy affects 300,000 Canadians and more than 50 million people worldwide. That's more than the number of people living with multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. A better understanding of this condition would allow people to be more aware of what to do to help someone having a seizure, which will help people suffering from this illness and ensure that they are safer.

Before I go on,

…I would like to thank the members who noted that changes needed to be made to the document. For example, in French using lavande instead of pourpre, and condition instead of maladie. I want to express my appreciation and say that I support those changes.

This is important for a young dad who wrote recently about his son, who began having seizures at the age of five months. His words were profound and powerful: “As a parent, a professional, and a Canadian, I ask you to please pass Bill C-278 and make the world our son will grow up in a little more friendly and understanding of the condition that affects him, and us, in every moment”.

I also heard from Marcel Allen, an Ottawa policeman who is in the last stages of developing a training program for front-line officers on how to respond to someone with a seizure disorder. This is something you'd understand, Madam Chair, as you were telling me earlier, from your experience as a teacher and having a student with epilepsy who often had three grand mal seizures a day.

Mr. Allen has created a lesson plan focusing on training, recognition, and response. It will be the most comprehensive training of law enforcement on this subject in North America.

Let me wrap up by thanking Cassidy; the Epilepsy Association of Nova Scotia, which has been so helpful; the Canadian Epilepsy Alliance; and the many other organizations that work hard to promote Purple Day and increase awareness about epilepsy.

I'd also like to thank Dr. Fry, who brought a number of amendments to committee. I thank her for these improvements to my bill. Bill C-278 will bring Cassidy's dream to fruition. We hope we can count on the support of all parliamentarians in the House, as we certainly have so far, as well as the Senate, to make this happen.

I want to mention that I distributed cards from the Canadian Epilepsy Alliance to everybody. You'll find them in front of you. I think you'll find them helpful in terms of what to do when someone is having a seizure.

I'll be happy to answer, or try to answer, any questions. Thank you.

8:50 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you so much, Mr. Regan, for your very insightful presentation and your commitment to this cause.

We'll also hear from Madam Therrien, please.

8:50 a.m.

Aurore Therrien Member of the Board Directors, Executive Director, Épilepsie Montréal Métropolitain, Canadian Epilepsy Alliance

Ladies and gentlemen, members of the Standing Committee on Health, good morning. I'm pleased to be here today and to represent the Canadian Epilepsy Alliance, as well as everyone served by our 25 member associations in Canada.

Épilepsie Montréal Métropolitain is a founding member of the Canadian Epilepsy Alliance, which has changed a lot in the past 11 years. Our umbrella group is the result of an innovative project that has enabled us, in the past 11 years, to pool our best local achievements and stay in touch almost daily in order to carry out our mission, which is to improve the quality of life of people living with epilepsy. We have also shared our essential values, our governance principles and our many resources.

In the past 11 years, we have conducted two surveys, created two papers Question d'épilepsie and Parlons d'épilepsie, launched an annual awareness campaign, which takes place in March, created two websites—"Epilepsy Matters" and "Purple Day"—and a phone number 1-866-EPILEPSY, designed various brochures and a number of projects. Our material has been published from the very start in both official languages—English and French. Over the past few years, we have had a representative at the International Bureau for Epilepsy. We have also established several partnerships with, among others, the Canadian League Against Epilepsy and with Neurological Heath Charities Canada, to name but two.

It's already been five years since the first Epilepsy Day was held on March 26 thanks to the initiative of young Cassidy Morgan, with the support of her family, her school and her local epilepsy association in Nova Scotia. She also received the unfailing support of Deirdre Floyd, who I'd like to say hello to today. Since then, she has been responsible for the national Purple Day committee and the international Purple Day committee. Ms. Floyd would have been with us today, but she is awaiting surgery to change a neurostimulator implant. So I commend her today for the significant amount of work she has done in the past five years. This initiative snowballed and today exists in many countries and, as of this year, on five continents, including the scientific research stations in the Arctic and in Antarctica.

I invite you to take a look at the video on www.purpleday.ca, showing images of children, adolescents and adults from around the world proudly wearing purple clothing in their daycares, schools, and workplaces. Today Cassidy and her many friends can say that they are no longer alone. At little Cassidy's request, they have all—in very large numbers—become ambassadors for epilepsy. They can finally dare to talk about this neurological condition in public, and that's just the beginning.

This is undeniably the largest awareness campaign dealing with epilepsy. So you'll understand why Bill C-278 is so important for all people living with the effects of epilepsy in Canada.

The colour purple has been associated with epilepsy for a few years now. It traditionally evokes isolation and solitude, but for little Cassidy, who was 9 years old when she created Purple Day, all shades of this colour were the same. That's why we kept the name "Purple Day" in English, because it was Cassidy's choice, it was her creation. We did not change the name in English. We kept the colour "lavande" in French for all French speakers in Canada. Our materials are created not only for Quebec, but also for all French speakers in Ontario, Nova Scotia, New Brunswick and Manitoba. So they are very pleased to receive our materials.

Once again, thank you for your invitation and for your attention to our request.

Thank you very much.

8:55 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you.

By video conference, we now have Ms. Iris Elliott. She is the executive director of the Epilepsy Association of Nova Scotia.

Ms. Elliott, you have a 10-minute presentation, and we'd love to hear from you.

8:55 a.m.

Executive Director, Epilepsy Association of Nova Scotia

Iris Elliott

Thank you. Thank you very much for giving me this opportunity to speak to the committee.

I would also like to thank Mr. Regan and his staff for the great cooperation we have received in developing Purple Day.

When I walked into the Epilepsy Association of Nova Scotia in June 2005, I knew virtually nothing about epilepsy. Actually, the only creature I ever knew that had anything to do with epilepsy was a dog that used to have what we called fits. I very soon learned that we don't use that term anymore. Another thing I learned very firmly that first day from Ms. Floyd, our president, was that we do not talk about people as being epileptics; we talk about people with epilepsy. Those were two very interesting things that I learned my very first day, because I knew nothing. I would say that I'm as reasonably well informed as anybody else. I knew nothing about epilepsy, and this is one of our problems: the general public knows so little about epilepsy that they fear it. They fear the results, both what they see and what they don't know.

One of the saddest things I have heard--which I heard when I first started with the Epilepsy Association of Nova Scotia, and it's with me to this day--was that people with epilepsy say that the attitudes of people around them cause them as many problems as their condition does. I really think it's very sad that people dealing with this condition, which can sometimes be very violent, find that it's the attitude we have that causes them more problems. I very soon realized that these attitudes had to be changed and that the mandate of the Epilepsy Association of Nova Scotia was to change attitudes to make life better for those people. There are 10,000 people in Nova Scotia who have epilepsy.

In common with all of the agencies in the CEA, the Canadian Epilepsy Alliance, one way we do this is through a classroom education program. When I first started at the epilepsy association, I was not the executive director. I was in charge of outreach. One of the basic things I did was go out to schools to try to start changing the attitudes of our young people, in this case in grade 5.

I was the person who went out to Cassidy's school. Cassidy, of course, is the founder of Purple Day, but we didn't know it then. I went out to her school to give a presentation to her class because her mother wanted her class to know a little bit about epilepsy, even though Cassidy had not told anyone other than her closest friends. She was afraid people would laugh at her and that nobody would want to be her friend.

I gave the presentation to the children, who were quite little. They weren't in grade 5, which is the grade we normally give the presentation to. I read a story, and I had a sock puppet, a rabbit. The story was called Lee: The Rabbit with Epilepsy.

I gave the presentation and showed them the puppet and everything. Afterwards, Cassidy, quite out of the blue, stood up and said, “I want to tell everybody that I have epilepsy.” Her mother was absolutely floored, because Cassidy had never told people in public.

That was the beginning of it all. Cassidy then went home and said to her mother, “Is there any time that people can find out more about epilepsy, a special day when we can support people with epilepsy?” She said she felt that she didn't know anybody else with epilepsy. She didn't know any kids with epilepsy. She thought she was the only person with epilepsy. Her mom said, “Well, I don't think so.”

Cassidy, who was nine years old, had this idea that she would start something called Purple Day. She asked her school principal if she could have a day at school when they would get people to wear purple. As you can see, I'm wearing purple today. I'm wearing my lovely Purple Day T-shirt. Whenever I go out to the schools, that's what I wear. The kids always comment on it. They say, “I like your T-shirt.”

Cassidy had this idea. She talked to her principal. It was the principal who decided on March 26, purely arbitrarily. He looked at his diary and said, “All right, Cassidy, you can have March 26.” This is where it all started.

Cassidy, her mom, the Epilepsy Association of Nova Scotia, Mr. Regan, and many more people—eventually, the whole of the CEA—as well as people in the States, all over Canada, and all around the world now celebrate Purple Day.

To go back to early on, one of the things I want to tell you a little bit about is what I do to try to raise awareness, which is what Purple Day is all about. When I go out to the schools, one of the things I do with the kids—it's an interactive presentation—is to show them a video of a tonic-clonic, or grand mal, seizure. I get volunteers to act out the commercial, and they act out the little boy or the little girl having the seizure and what the people around the child do. Do they know what to do, or do they not know what to do?

The children act this out, and in this way they learn what to do if somebody is having a seizure. I also talk to them a little bit about how they think that person would feel, having a seizure in front of all of his or her friends. What do you think you could say to this person to make him or her feel better? If the person says to you, “Oh, I feel so embarrassed. I just had a seizure, and everybody thinks I'm stupid now”, what would you say? I get the children to come up with answers, and they always do. They always begin to think of how it would feel.

This is part of what we do. We're trying to get people who don't have epilepsy to realize and feel what it's like to have this condition, to be more empathetic towards people who have this condition, and to learn more about it, so that if they see somebody having a seizure, not only do they know what to do, but they're also not scared by, it because they know what to do. It's not the great unknown.

The wonderful thing about Purple Day is that there are so many levels of involvement. We can just say to people, “All right, Purple Day—can you just wear purple on Purple Day to show people with epilepsy that you care?” That would be your basic level. Then it grows, and you can get people, as well as wearing purple, to hand out ribbons, hand out cards, do fundraisers, or make purple cookies or cupcakes. It's whatever they feel comfortable with. It's all involving and it's all-encompassing. Anybody can do it. This is how Purple Day has grown: you can just get involved a tiny bit, and then next year maybe you can do more.

This is what's so wonderful about Purple Day. What would be so wonderful about having the Purple Day Act is that Purple Day would be officially recognized so that everybody would know that this is the day when we wear purple, we learn more about epilepsy, and we support people with epilepsy.

Among the many things people with epilepsy have to contend with is the fact that people don't know much about it. Sometimes people may think that because someone has epilepsy, they are stupid or not very smart. One of the things I do during my presentation is get the students to look at pictures of people with epilepsy who have accomplished marvellous achievements, so that the students recognize that people with epilepsy are not necessarily stupid. Some people with epilepsy probably aren't too bright, and other people with epilepsy are very bright. It's just like the general public.

A lot of the time, epilepsy is misconstrued. If someone has a seizure in public, people think the person is drunk or stupid. People with epilepsy have been arrested, thrown in drunk tanks, and tasered because they were having a seizure and the first responders who reacted did not know the person was having a seizure. The responders thought the person was drunk or stupid.

This is the big thing about Purple Day. Not just on March 26 but all the year round, what we in the Epilepsy Association of Nova Scotia, the Canadian Epilepsy Alliance, and people around the world are trying to do is raise everybody's awareness so that people with epilepsy will have a better life.

In conclusion—

9:05 a.m.

Conservative

The Chair Conservative Joy Smith

Ms. Elliott, I'm sorry to interrupt, but you do have just 30 seconds left, and then we go into our next presentation.

Thank you.

9:05 a.m.

Executive Director, Epilepsy Association of Nova Scotia

Iris Elliott

I'm just winding up, Madam Chair. Thank you very much.

I'd just like to thank the committee, once again, and to say that the 300,000 people in Canada, including the 10,000 people in Nova Scotia, will thank all of you very much for passing this bill, which will make Purple Day an official Canadian day.

Thank you.

9:05 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you so much, Ms. Elliott. That was very helpful. We appreciate your presentation very much.

Now we'll go to Ms. Sarah Ward.

9:05 a.m.

Sarah Ward As an Individual

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.

9:15 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you very much for your presentation, Ms. Ward.

We'll now go into our first round of Q and A. Each person will have seven minutes. We will begin with Ms. Davies.

9:15 a.m.

NDP

Libby Davies NDP Vancouver East, BC

Thank you very much, Chairperson.

First of all, thank you so much to the witnesses today, and to Mr. Regan for bringing the bill forward. I feel that we've learned a geat deal already, just in the course of half an hour, about epilepsy. I think one of the things that the witnesses have shown us today is the importance of language, in that language itself can be very stigmatizing. If any of us makes a mistake today with language, I'm sure it will be out of lack of knowledge rather than intention, but as you've said, I think that's very much one of the issues around awareness. Making people understand about the way they speak about an issue is really important.

I have two questions. I'm very interested in knowing about people living with epilepsy, particularly in the work environment. Nobody really touched on that. What is the response of employers? What is the work environment like for people living with epilepsy?

We could even begin with our own jurisdiction, the federal government.

Mr. Regan, I don't know whether you've had any opportunity to find out the situation in the various departments of the federal government. We are an employment equity employer. We have a duty to accommodate in the workplace. These are all things that are enshrined in law, but as we know, often translating those commitments into daily practice and awareness and understanding is not so easy.

I'd be very interested if any of the witnesses could talk a little bit about what the workplace is like for people living with epilepsy, what kinds of issues they face there, and whether you have any good models to show us. Do you know of employers that have taken on this issue? You've talked about schools, which I think is wonderful, but can you offer anything about workplaces?

Then, if we have time, I'd be fascinated to know about the medical side and whether research is currently under way in terms of treatment, medication, and so on.

9:15 a.m.

Conservative

The Chair Conservative Joy Smith

Who would like to start?

Go ahead, Ms. Therrien.

9:15 a.m.

Member of the Board Directors, Executive Director, Épilepsie Montréal Métropolitain, Canadian Epilepsy Alliance

Aurore Therrien

The workplace always represents a major challenge for people with epilepsy. A number of them have both the potential to work and the training they need. Everything is fine as long as they do not have a seizure. But the moment they do have a seizure, everything can change.

One girl I assisted had a very good education, she had passed an interview and she had got the job. Though she had not had a seizure, out of honesty, she decided to talk to her employer about it, and she was let go. That was a real shame for her because her epilepsy had never really affected her. When she was younger, she had been able to study without too much difficulty. When she mentioned it, she was fired, without really being told why. She was supposed to get married six months later and so was counting on that first job.

A lot remains to be done in this regard. Epilepsy is a neurological condition that still causes a lot of concern, because people are not aware of it and come up with their own ideas of what it might be without really knowing. So we have to work with employers on workplace awareness.

Sometimes, people have told me how open employers are. Epilepsy is such a common problem that it is not unusual for someone to know someone else who has it, a family member, a neighbour, a friend. In cases like that, employers are more receptive, but they are not in the majority. So an awful lot remains to be done.

I know one person with epilepsy who has not had a seizure for 15 years and has never told her employer. She was afraid of making a mistake that the employer might attribute to her epilepsy rather than to simple clumsiness. It causes people to keep their condition hidden. When a seizure happens, it surprises everyone. Sometimes it is not just the employer who can lack understanding, it can be the co-workers as well. This is a very important point and I thank you for drawing attention to it. There is a lot of work to be done.

9:20 a.m.

Liberal

Geoff Regan Liberal Halifax West, NS

Very briefly, Madam Chair, I think “lack of knowledge” is a very appropriate phrase to use. You mentioned that you've learned something today; I think we all have. That's the whole idea. If we are having a day that creates more awareness about epilepsy, what to do in case of a seizure, what the cause is, and so forth, all of this adds to knowledge.

I think it also helpfully highlights to employers what's involved and to not be afraid of someone who has epilepsy. In the same way that people with disabilities can often be fairly easily accommodated and make a great contribution in workplaces, the same is true of people with epilepsy, obviously. However, knowledge is important.

I'm afraid I can't answer your question about the Government of Canada's programs in this regard. I don't know if Mr. Carrie could get some information on that from the department at some point, but I'll leave that to the committee to work out. As I said at the beginning, there are witnesses here who have much more knowledge about this than I do, so I'm glad there are others to answer questions. As an example, what is happening in medical research?

9:20 a.m.

As an Individual

Sarah Ward

I'm not so up to date on the medical research side of things. I'm not doing research in that field anymore, but I know there are a lot of people involved in research. My previous supervisor is certainly working on some new things.

It's much needed. As I mentioned, a lot of the medications aren't successful in many cases. There are other treatment options, such as surgery, but I think it can only be used in about 10% of cases and only for certain types of epilepsy. The ketogenic diet is another treatment, but it's often ineffective. Certainly more research needs to be done, and I know there are active researchers out there working toward that goal.

9:20 a.m.

Conservative

The Chair Conservative Joy Smith

Thank you.

Dr. Carrie, I think you're sharing your time with Mr. Lizon. Would you like to begin?

9:20 a.m.

Conservative

Colin Carrie Conservative Oshawa, ON

Yes, I am, Madam Chair. Thank you very much.

I want to thank my colleague Geoff for bringing this forward.

In particular, Cassidy, if you're listening, I want to thank you, because I'm actually one of those Canadians who was diagnosed with epilepsy. I don't know how it started, but I think it had something to do with a head trauma that I received when I was younger.

I remember my seizures as a young child. I was diagnosed petit mal, but I used to pass out and at times I would lose bladder control, which, when you're five or six years old, can be quite embarrassing. It probably would be quite embarrassing right now as well if I had a seizure, but I remember being in playgrounds and passing out. The other kids would just stand around me. They wouldn't know what to do. After I recovered, I remember walking home in a groggy state. As a child, it was something that was really difficult to deal with, because I didn't understand it.

I remember that one of the places where I used to have my seizures was church. I don't know what it was about the lights, or maybe it was something about the atmosphere, but I soon realized that I could use it to my advantage. It was interesting that Sarah brought up demonic possession—

9:20 a.m.

Voices

Oh, oh!

9:20 a.m.

Conservative

Colin Carrie Conservative Oshawa, ON

—but it worked to my benefit as a great excuse for not having to go to church on Sunday.

Anyway, I wanted to ask you how common epilepsy is among children under five years old and how it affects the learning and growth of kids.

9:25 a.m.

Conservative

The Chair Conservative Joy Smith

Who would like to take that?

Ms. Therrien, go ahead.

9:25 a.m.

Member of the Board Directors, Executive Director, Épilepsie Montréal Métropolitain, Canadian Epilepsy Alliance

Aurore Therrien

Epilepsy often occurs with elementary school children. The first seizures often occur between the ages of six and 12, but they can occur at any age. But it is a little more frequent among elementary school children. That is why we have such a big presence in schools. We are creating awareness.

9:25 a.m.

Liberal

Geoff Regan Liberal Halifax West, NS

Madam Chair, I hope that other young people and children are listening along with Cassidy today, because I think Mr. Carrie's story would be inspiring for them: he has epilepsy, and here he is, a member of Parliament doing work in the Parliament of Canada.