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The ‘PURPLExity’ of Epilepsy

Purplexity

Epilepsy. What is the first word you think of? Most people imagine someone foaming at the mouth, falling on the floor, and shaking all over. A full on seizure.

However, that is not quite true. In many cases, epilepsy is an invisible illness that goes unnoticed by the average person. If someone does have a seizure, too often the average person panics and provides the wrong first aid, more harmful than helpful. Epilepsy is a neurological disorder which causes the brain to misfire, setting off a series of seizures. Epilepsy can occur in one part of the brain, but sometimes affects the entire body’s functions.

Ten years ago, I was diagnosed with epilepsy. I attended Allegany College of Maryland, the Somerset Campus. During my freshman year, I had a class called Survey of American Literature. The room used a new technology called Skype. Skype is a satellite telephone that broadcasts from anywhere in the world that can get a good signal. Here, the professor went to one of the school’s campuses. One minute, I remember talking to my friends before the television went on. The next, I woke up in the ambulance. Perplexed, I thought I fell asleep in class. The EMTs asked lots of questions.

Everything goes blurry here until I called my mom. Later, I telephoned my professor. He was glad to know I was OK. We discussed a way for me to attend class but not look at the camera.

My doctor sent me to a neurologist. He diagnosed me with epilepsy. I gave up a lot of things: no more caffeine, movies, pork products, video games, and of course, chocolate. Later, I went to Geneva College where I discovered disability resources and made friends to last me a lifetime. I got a new neurologist (my previous one left within the two-year span of ACM) who seemed to understand my needs.

My migraine medication made me sick. It was a rough ride for seven long years. I am off my migraine medication now. I am not alone in my struggles. Three million Americans suffer from epilepsy. One in 10 adults will suffer from a seizure in his or her lifetime. Why don’t people talk about epilepsy? I think we are afraid of it or don’t understand how it works.

There is not enough advertising out there. Most movies and television shows stereotype epilepsy as full on seizures, bad first aid, and people with epilepsy are portrayed as stupid or foolish. Purple Day, or Epilepsy Awareness sets out to change that. In 2008, a girl named Cassidy Megan wanted to know if anyone else suffered from epilepsy. She decided to create her own holiday called Purple Day. Last year, her city passed a law declaring Purple Day an official holiday. She was 12 years old at the time.

She also won the Queen Elizabeth I Diamond Jubilee Award, the highest honor for a citizen. Purple Day is celebrated on March 26. If you want to celebrate the holiday, all you have to do is wear purple, promote epilepsy awareness in your school or work, or simply talk about epilepsy. If you want more information on how to help, visit www.purpleday.org, www.efa.org, or www.akfus.org. or you can contact the local branch of the Epilepsy Foundation of America in Johnstown. Either way, the more people who know about it, the better.

I hope to start a support group for epilepsy soon. I will be holding a workshop at Pages and Light on March 26 from 6-8 p.m. that day. Feel free to attend and ask questions. Here is my favorite quote on a plate I have at home from my Aunt Robin: “Jump because you can. Run because you can. Walk because you can. Dance because you can. Sing because you can. Laugh because you can. Smile because you can. Do it for those who can’t.” How will you help?

Source: http://articles.dailyamerican.com/2013-03-22/opinion/37946455_1_epilepsy-awareness-purple-day-cassidy-megan

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1 Comment

  1. Your article hit home. It’s true that in this day and age that the majority of people still do not understand epilepsy. Too many people assume it is a mental illness, and do not realize that it is a neurological condition.
    Sometimes it is a daily struggle to overcome the many challenges of the simplest of things. Getting to and from work, especially if you cannot drive. The explaining to your supervisor and co-workers why you have not been to work, or why you need the time off to recuperate or to get adjusted to new medications.
    After having epilepsy for all of my life, I find that even now, it is still misunderstood, and it can become a social stigma for some sufferers. You are correct that there is not enough advertising, People with epilepsy are still stereotyped. Well intentioned folks still perform outdated first aid, (like the silver spoon in the mouth).
    I wish you much luck in your current and future endeavors, and GO PURPLE!

    Reply

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