Hi! My name is Cassidy Megan, & I am the founder of Purple Day. I founded Purple Day in 2008 & I would like to give you a little bit of the history of why 🙂 .
When I found out I had epilepsy I was 7 years old in grade 1, I was so scared, embarrassed, and I felt so alone. I really thought I was the only kid with epilepsy. I also thought that I was the only one with epilepsy who felt this way. I didn’t want anyone to know I had epilepsy, and I wouldn’t let my parents or anyone talk about me having epilepsy.
When I was in grade 2, my mom had the Epilepsy Association of Nova Scotia (now called The Epilepsy Association of the Maritimes ‘EAM’) come to my school to do a presentation to my class to help them learn about epilepsy. I’ve seen how my friends were acting and really wanting to learn more. When they asked the presenter if she knew anyone with epilepsy, she told them “yes”. That is when I told my mom and teacher we could tell them I had epilepsy too. I was scared but I’ve seen how nice they were all being and wanting to learn more.
Then the next year, I’m in grade 3 and was sitting on the couch with my mom one day and I asked her why there wasn’t just one day for epilepsy like there was for cancer or St.Patrick’s Day. A day when people could learn more about epilepsy, so that people who have epilepsy would know that they weren’t alone and that people could learn more about epilepsy, and how to help someone if they were having a seizure.
I was originally diagnosed at the age of 7 with complex partial epilepsy and predisposed to tonic clonic. I had my first known tonic clonic in my sleep in 2015 and have a been having them since, mostly in my sleep as well as some myoclonic jerks.
In the summer of 2019, I spent 2 weeks in the hospital in the epilepsy monitoring unit because they couldn’t pinpoint how and where my seizures were coming from. After the tests there I was re-diagnosed with generalized epilepsy and photosensitive epilepsy.
I also have a couple other chronic health issues including a kidney disease and a connective tissue disease.
Even with my epilepsy and other health issues I do not let it stop me. I am a competitive archer and a professional model. I am also a full time student in collage and studying film. Epilepsy and my health is a part of me but it does not define me 🙂
My mom explained to me that the month of March was epilepsy awareness month in Canada and that there were different months in different parts of the world for epilepsy awareness. I told her I wanted to have just ONE day a year when we could have more awareness for epilepsy, a day that people could come together, and help each other.
I wanted to have a day when people with epilepsy would know that they weren’t alone and that they didn’t have to be afraid, embarrassed or feel like I did. I also wanted people who didn’t have epilepsy to learn more about it, to know that there are different types of seizures and how to help if they see someone having a seizure. I also wanted to let everyone know that even though people have epilepsy, we are the same as everyone else and that we aren’t different. That we have epilepsy just like someone may have blue or brown eyes, that our epilepsy does not define us.
My mom said ok, and asked me what I wanted to do. I told I wanted to get everyone to wear something purple and to tell people why, and to talk about epilepsy. She did explain to me that lavender was the (official) colour for epilepsy. I told her that lavender is just a shade of purple and by calling it Purple Day people could wear what ever shade of purple they wanted. I told her I wanted all my family and school and people around the WHOLE world to do this and my mom said “oh well lets just stick with our community for now”. 😀 But I never gave up and I never will, I wanted to make sure that people all over the world didn’t feel like I did and that they knew that they weren’t alone.<3
The reason it is on March 26th is that when we spoke to the principal at my school he said that the day that worked best for him and the school to do this and have The Epilepsy Association of Nova Scotia come down would be March 26th. Where I wanted to do this every year I wanted to have that day, March 26th as a world epilepsy awareness day forever and because it would be easier for people to remember an actual date instead of saying the 3rd Thursday every March or something like that.
We talked to my brother’s school, various friends and family, I emailed every politician in Canada, universities and asked them to join us, to wear Purple on March 26th and to spread the word, and they did. The Epilepsy Association of Nova Scotia (now called EAM) joined and became my Canadian global partner. In 2009, The Anita Kaufmann Foundation (AKF) joined us and became my USA global partner.
Since I started Purple Day in 2008 I have seen it grown and help so many and with the help of my global partners, The Epilepsy Association of the Maritimes and The Anita Kaufmann Foundation as well the many Purple Day ambassadors, Purple Day partners, businesses, schools, cities, towns, countries, other epilepsy agencies/groups etc from all over the world. Purple Day is now celebrated on every continent and in over 100 countries. In 2018 it was celebrated in outer space on the International Space Station and at NASA. In 2012 the Canadian Government passed the Purple Day Act, making it an official law in Canada, making March 26th Purple Day.
I have seen March 26th become a day that is celebrated by people with epilepsy and people without epilepsy all over the world. It has become a day when people learn more about epilepsy. A day when people with epilepsy don’t feel alone or afraid. It has become a day that all of us, from all over the world can call our own. A day for all of us to be proud and stand together. There are countries and people celebrating epilepsy and epilepsy awareness on March 26th every year on every continent in the world, and that’s including Antarctica! 🙂
Since I started Purple Day, I see more people talking about epilepsy, I see people from all over the world no matter how old they are, what race or religion they or where they are from, coming together as one to stand together and help each other grow braver in themselves and educating the world about epilepsy.
I hear stories from people who say that Purple Day has helped them speak out, be brave and feel a part of something for them. They feel like they have a day for them and epilepsy. I also hear stories of how Purple Day and all the awareness with it has helped people who do and who don’t have epilepsy learn more about it.
I also hear stories about the stigma and discrimination that people are still facing, stories about people with epilepsy dealing with anxiety and depression and I hear stories of people still afraid, still losing their jobs, their families and more. All of these epilepsy stories tell me that even though we have come so far there is still so much more work to do.
Epilepsy, epilepsy education, and awareness need to be talked about all the time, it is the only way we are going to change and erase the stigma and discrimination that comes with epilepsy.
Together we can and we will make a difference.