Today, 26 March is Purple Day! Cassidy Megan created Purple Day when she was just eight years old to help raise awareness of epilepsy. Here she tells us of her experiences of living with epilepsy and her future plans for Purple Day in the years to come.
How did you feel when you were first diagnosed with epilepsy?
When I was first diagnosed I felt scared and alone, I didn’t know anything about epilepsy or anyone who had it.
After a year of hiding it and learning more, the Epilepsy Association of the Maritimes gave a presentation and I saw how understanding my friends were and that gave me the courage to speak out about my epilepsy to them.
What type of seizures do you have? How does it affect you?
I was originally diagnosed with complex partial epilepsy but they said I was predisposed to tonic clonic. In 2015 I had my 1st known tonic clonic in my sleep.
In 2019, I was admitted for a long term EEG in the Epilepsy Monitoring Unit at my local hospital.
After two weeks I was discharged and re-diagnosed with generalised epilepsy, photosensitive epilepsy and myoclonic jerks.
I try not to let my epilepsy affect me. I make reminders and notes to help with my memory, I have learned that I need to be sure I get proper rest, I can do anything anyone else can do, I just have to sometimes make adaptations.
What challenges have you faced since being diagnosed and how have you overcome them?
Some challenges that come with being diagnosed with epilepsy is that when I was younger I wasn’t allowed to go for walks, biking, or swimming by myself in case of a seizure, but I find most activities are more fun with friends so it wasn’t too hard with those.
The biggest struggle for me came from people telling me I couldn’t do something like go to university or get a good job, for me the stigma was the worst part.
Despite that, I still did both those and I proved them all wrong, I am a strong believer that people with epilepsy can live a normal life like anybody else, we may just need some adaptations but we can do it.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Epilepsy is definitely more than just the seizures. From my experience, epilepsy not only affects my physical health with being sore after a seizure, it can affect your mental health too.
I’ve had my moments and times of despair due to my seizures changes, the constant battle against stigma, having to cancel plans or bail on commitments due to having a seizure.
Epilepsy also affects the family and friends, not just the person having a seizure, the family worries when we go out, will we have a seizure?
Will there be someone there who knows how to help? What about SUDEP? The same worries are with our friends and peers.
Why did you decide to create Purple Day when you were just eight years old?
I started Purple Day because even though I had told my peers about my epilepsy, I still didn’t know anyone who had it.
I wanted to find others who had epilepsy in the world and to then let them know that they aren’t alone, and that they don’t have to feel scared and alone anymore.
Also, I wanted to have one day that belonged to us, one day that we can come together and spread mass awareness to the world. Purple Day is that day for us, and everyone to come together and show their support.
Can you believe that it has grown into a Worldwide awareness day?
From day one I wanted Purple Day to be worldwide, and as I am older, I don’t think I realised how big that really was but I couldn’t be more happy with the progress and growth of it.
As big as Purple Day is there is still so much work to be done and still so much stigma and myths to erase and people to reach and educate.
Why did you decide to pick the colour purple to represent the day?
I picked the colour purple because when I came up with the idea my mum explained to me lavender is official colour for epilepsy and I told her that I wanted to call it Purple Day because this way people could wear whatever shade of purple they wanted.
What plans are being organised for this year’s Purple Day?
This year’s Purple Day is absolutely amazing, it has definitely been different where most of the world is doing things virtually right now but honestly it has made more people be able to attend virtual events, engage more on social media and spread even more awareness.
There are so many amazing things happening around the world, landmarks like the Sydney Opera House, CN Tower, Christ the Redeemer Statue, Niagara Falls, Edinburgh Castle, Callendar House and so many more will be lit Purple for Purple Day March 26th.
My USA Purple Day partner, The Anita Kaufmann Foundation, through their Purple Day every Day initiative are having a three day conference, there is a live broadcast happening of landmarks lit up across Canada, there are webinars, conferences, virtual walks and galas.
It is amazing to see so much awareness and it fills my heart with so much love and gratitude.
What are your hopes for Purple Day in the future?
My hopes for Purple Day in the future is that it will continue to grow even bigger and better, spreading more awareness so that epilepsy is no longer a taboo subject, so that we can break all the myths and stigma that comes with epilepsy, so that epilepsy becomes the norm, just like wearing glasses and so that one day everyone will know what to do if they see someone having a seizure and that one day we can have a cure.
What would you say to someone who has been recently diagnosed with epilepsy?
I would say, it is important to work with your medical team, keep notes and ask questions. I know it’s scary at first, and though you may feel alone, please know that you aren’t alone.
There are people all over the world that have gone through what you are going through, and many of us are always open to people reaching out to ask questions or even just to talk about epilepsy.
You never have to feel alone, because you aren’t, you have the whole epilepsy community around the world behind you.
Reach out to your local agency and find epilepsy groups online to talk to, to help you on your journey with epilepsy.
Please feel free to reach out to me as well and please remember you are not alone on this journey, you are warriors and champions and we are all on this journey together, epilepsy is a part of us but it does not define us.
Is there anything else you would like to add?
I would like to personally thank everyone for all the hard work they are doing and also a huge thank you to Epilepsy Scotland and all the agencies there for the amazing work they are all doing.
Each and every one of you are making the world a kinder, safer and better place for those living with epilepsy.
I would like to also remind everyone that they are not alone, that they are all warriors and champions and we are all on this journey together.
We would love to hear what you have planned for Purple Day! Let us know by emailing email@example.com.