Epilepsy. You’ve probably heard of it, and might even know someone who has it.
But you probably aren’t aware of the different types of epilepsy, the many ways it can present itself and how it can affect the sufferer beyond just taking a few pills to control it. Most importantly of all, you may not be aware of what to do if you witness someone having a seizure. And it’s for all of these reasons (and more) that 26th March is so important.
Today is Purple Day. Organised by Epilepsy Action, it’s an international day aimed at raising awareness of epilepsy. How? By doing something purple. Whether it’s wearing purple, baking with purple food colouring, organising a purple coloured party, whatever it is, they want people to use it to raise awareness of epilepsy, dispel the myths, promote the facts and to maybe even raise a few pennies for epilepsy charities along the way.
Why purple? Because in some cultures, lavender is often associated with solitude, isolation and loneliness, which many epileptics feel.
There are over 65m people out there with epilepsy, and it’s likely that you probably know someone who has it. There are many misconceptions about it, and that’s part of the reason why this day is so important.
Although it’s generally important to be more aware of epilepsy, I admit part of the reason for my passion for spreading awareness is personal. I was diagnosed with epilepsy when I was still at secondary school so it’s been a major part of my life for a long time.
I was diagnosed as I was entering the difficult teenage years. As I was trying to dealing with new changes, teenage insecurities, trying to summon up the courage to ask out my crush as well as preparing for exams, I was put on my first epilepsy medication. It made me gain a lot of weight, which as you can imagine for a teenage girl was my worst nightmare, and some insecurities that should have disappeared by now are still there as a result.
I was lucky enough to change medications a few years later, and this particular medication (called Lamotrigine) was hailed by many epileptics as one of the best things to happen for us. It controls epilepsy really well and has fewer side effects. Personally, memory loss is the only side effect that really affects my life, and I’d rather have that than be seizuring. To this day I take this medication, and despite being seizure free for a while now, I can’t see myself ever choosing to come off it.
Often brought on by stress, dehydration, flashing lights (and occasionally forgetting to take my medication), my epilepsy is something that I’ve always needed to be aware of. I have to tell new friends, co-workers and partners about my epilepsy and what they need to do should I start fitting or absencing (which is like watching someone have a really intense daydream).
The thing which gets me the most attention seems to be the fact I have to look away from flashing lights (which made seeing Muse at Reading festival an interesting experience…I basically saw the first 2 minutes and spent the rest of the time looking at the floor and raving to myself). People stare, make comments and occasionally laugh, as the crazy girl next to them is covering her eyes, looking away and still trying to dance. I want to tell them that I’m an epileptic and I’m looking after my health, but sometimes it’s easier just to ignore them and try and enjoy my night.
I admit I’m incredibly lucky. My epilepsy is under control, which is something many other epileptics can’t say. I know what causes it and if I deal with those things, a seizure is unlikely, which again is something not all epileptics can say. My epilepsy doesn’t define me, but others don’t feel the same.
I have friends who have lost jobs because they couldn’t drive for a year when they had a seizure (which is the law), other friends regularly have absences during important business meetings, and I’ve met people who count themselves lucky if they only have five seizures a day.
So why am I telling you all of this? I’m hoping that by sharing my story, you might learn a few things about how it can affect people and want to look more into it yourself. And that’s what Purple Day is all about.
To find out more about Purple Day, visit this website.
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