What made you create Purple Day?
I created Purple Day because when I found out I had epilepsy I thought I was the only kid with the condition. I was afraid if I told my friends or if people found out I had epilepsy that they would make fun of me and not want to be my friend.
I wanted to have a day – what became Purple Day – to see if there were others out there that felt the same way I did. I wanted them to know that they were not alone and that they didn’t have to be afraid.
I also wanted people who didn’t have epilepsy to learn more about it. I wanted people to know that there are different types of seizure and how to help if they see someone having a seizure. I also wanted to let everyone know that people with epilepsy are the same as everyone else – we aren’t different. We have epilepsy just like you have blue eyes or brown hair.
Epilepsy made me feel alone, embarrassed and afraid. When some people found out I had epilepsy they didn’t understand or know what to do. They stopped inviting me to go camping with them or to sleepovers.
People didn’t understand my type of epilepsy. I have complex focal seizures. When they found out what my seizures were they would say things like: “Oh that’s good, at least you don’t have the bad type.”
I also wasn’t allowed to do some things my brother could do. My whole family and I had to learn how to live with epilepsy and what my limits were.
Do you think epilepsy is a subject people are uncomfortable talking about?
I wanted to talk to people about epilepsy because I realised that people needed to know about it. I do think that it is a subject people are uncomfortable talking about, but it is getting better every day. People are becoming stronger by speaking out about their epilepsy and coming together to educate people around the world.
Do you think awareness of epilepsy is a bit poor in people generally?
I think that the awareness of epilepsy has a long way to come, but it is getting better.
The positive effect of talking about epilepsy more is that people are less afraid. People with epilepsy can feel more comfortable telling others about their condition. They will realise that it is not something to be ashamed of and that they aren’t alone. Talking about epilepsy will help people learn that the myths are not true, that people with epilepsy are just regular people.
How have you seen Purple Day growing since it was created in 2008?
I have seen Purple Day growing larger every year. It started in my small community in Nova Scotia, Canada. I now have seen it grow to bring the world together on this one day to be proud and strong. There are more countries and people celebrating Purple Day every year. The day is now celebrated on every continent in the world, including Antarctica!
It’s great to see more people talking about epilepsy. I see people from all over the world coming together as one to stand against epilepsy. No matter how old they are, what race or religion they are or where they come from. These people help each other grow braver in themselves and help educate the world about this condition.
I am so proud of all the hard work of my global partners, The Epilepsy Association of Nova Scotia and The Anita Kaufmann Foundation. I’m also proud of everyone around the world – I would like to thank them with all my heart!
I chose purple because lavender is internationally recognised as the colour of epilepsy. When my mom told me that, I said: “Lavender is just a shade of purple. Everyone can wear any shade of purple to show that they care and show support for people with epilepsy!”
What will you be doing to celebrate Purple Day and raise awareness?
If people would like to get involved with Purple Day they can wear something purple, and talk about Purple Day and epilepsy. They can have purple celebrations at their school, work or wherever. They can get their local community to recognise 26 March as Purple Day for epilepsy. People can get involved with Purple Day in whatever way is best for them!
Leading up to Purple Day 2014, I will be visiting a local youth theatre and doing a Purple Day walk. I’ll also be going to City Hall to speak and give out purple cupcakes, and I’ll be with our mayor for a Purple Day flag-raising.
I am not quite sure yet what I will be doing exactly on 26 March, but I know I will be making sure Purple Day 2014 will be bigger and better than ever before! To raise awareness, I am going to be doing everything that I possibly can.
What would you like to see change in the future for people who are living with epilepsy around the world?
What I would like to see change in the future for people living with epilepsy around the world is that they would never again feel alone, afraid or embarrassed.
I would like to see more people speaking out, more epilepsy ambassadors and more education about the condition for everyone.
No one deserves to feel ashamed.
Read more about Purple Day.
Buy Purple Day merchandise in the Epilepsy Action shop.