Epilepsy awareness – Purple Day!

Happy Purple Day!

Did you know that 50 million people worldwide have epilepsy? I certainly did not and I am one of them!

This means that 1/100 people are battling their own brains. When you are epileptic, it’s very hard, or at least it is for me, to think anyone else is going through exactly what you are. This is because epilepsy is such an umbrella term – it means in one form or another you have seizures.

There are so many other things that people don’t know about epilepsy, so today I am going to let you into our little secret club, and tell you some things you probably didn’t know.

  • First I am going to start by telling you that the whole put-something-in-her-mouth-she-is-seizing is a myth. So, back away with that large eraser! There is absolutely no reason to do this. In fact you are probably going to cause more harm than good. I know your intentions are not to choke the poor person you are trying to help, but this only started because someone thought you could bite off your tongue and swallow it. You can’t…it’s attached.
  • Did you know that grapefruit can mess around with some seizure and heart medications? I didn’t, until one day while eating a deliciously tart and magical grapefruit, our occupational nurse at work walked by and told me that I shouldn’t be eating that. She was actually quite shocked that I had never been told that! It was too late – I had a seizure later that day. Oy! So I avoided them…until now. Now I eat them at my desk all messy and slurpy and I don’t care who sees or hears me because I missed them, oh how I missed them!
  • This one I thought was a little ridiculous, but I remember telling someone (names will not be mentioned) I was epileptic and they recoiled and asked me if I was contagious. Now at the time I was really dumbfounded and pissed off that someone could think epilepsy is contagious. You are absolutely right ma’am! If I sneeze on you, immediately you will start to convulse.

    However, now I know it is because people simply do not know, and by asking, I am educating them so they won’t look so silly next time. This myth came from back in the day when epileptics were kept in an asylum with patients with mental disorders. They were, of course, kept separate because they were considered contagious. Silly, silly, silly!

  • You can die from epilepsy. Death from a seizure is called SUDEP (Sudden Unexpected Death in Epilepsy). There is still so much more research that needs to be done, as researchers and neurologists just don’t know why people pass away from seizures, which is why they are so scary. Death can also be caused when multiple seizures occur, or when someone is having trouble coming out of a seizure. Other than giving it a Harry Potter name – status epilepticus – again they just don’t know why. SCARY!
  • Epilepsy can not be cured, but it can be managed! Managing it means figuring out what works for you. For me, in particular, my triggers were mostly environmental: not eating right, not taking care of myself, letting stress get to me, and being over-medicated. In every epileptic, seizures and triggers are TOTALLY unique; for one person hitting their elbow might be the trigger, for another it might be a stressful situation, but either way seizures often tend to look similar.
  • The weirdest place I have ever had a seizure is in my sister Julia’s van – so very uncomfortable, more uncomfortable than normal. BUT silver lining – the chairs reclined, and she has a video screen in the back which came in handy for distracting me from the pain and nausea that comes after a seizure.
  • Seizures never get easier to handle or to go through for anyone. You may become a pro, and expect what is coming next, but things can change in a moment’s notice. And let me tell you it never gets easier to see mascara tears from those who are taking care of you, as you go into one.
  • EVERYONE is born with a seizure threshold. Yes, even you. It just depends on how high or low it is whether or not your triggers will cause a seizure.

Now that I have thoroughly scarred you let me dazzle you! Purple Day was created by Cassidy Megan, a young girl who is fighting the battle that is epilepsy. She wanted to spread the word about it. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. She is an inspiration and even has her own blog.

For those of you who are reading this and who are epileptic – I would like to reach out to you! If you have questions, or just want someone to talk to, I know I was very scared and had questions that my doctor could’t answer. Like, how I am going to deal with everything ? How will my family cope?  I want you to know that I am here to lend an ear.

Happy Purple Day everyone!

~ Jacqui

Ed. Here’s a great infographic explaining seizure first aid. The best thing to do in case of a seizure is to stay calm, stay with the person, and support them when they are done seizing.