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Wednesday, October 31, 2012

Epilepsy Awareness Month


As you may or may not know, I posted a personal update a month or so back which talked about switching to a new medication, and the impact it was having on my life at the time. I'm switching from a medication that I have been on for roughly 25 years which I take to control epileptic seizures.

27 years ago, my mother gave birth to a healthy 9+ pound baby... with epilepsy. My parents and doctors tried 2-3 different medicines to control my seizures before settling on Tegretol; which I was on from a very young age (probably around 3) until about a month ago. It controlled my seizures well but, since I have been on it longer than I can remember, I had no idea what side effects I was seeing from the medication.

In July I had my first seizure in over 7 years. Since I had a breakthrough seizure, my doctor suggested I try a new medication which tends to have fewer side effects. So far it is doing wonders for me. No seizures since the one in July, I have MUCH more energy, I can think more clearly, and I just feel like a weight has been lifted from me.

Another thing that happened as a result of the seizure in July is that I cannot drive for 6 months. Assuming that my new medicine (Keppra) continues to work, I can start driving again in early January. This has made for an interesting and challenging few months. It has been almost 10 years since I've had to have someone drive me everywhere I go, and I was quickly reminded how difficult that can be at times. However, I'd rather be safe than sorry. Until I know that my new medicine is working properly, not driving is a good idea anyways.


This is just one of the many chapters in my life-long battle with epilepsy. And as strange as this may seem to many of you, I'm sometimes thankful for my epilepsy.

No, it is not fun having a seizure; waking up and not knowing where I am or what happened. It's not always fun having to explain my situation to others, or even being criticized or mocked because I have seizures. (Unfortunately, that was not an uncommon occurrence when I was a kid.) But on the other hand, my experiences have made me a stronger person. And the local Epilepsy Foundation and their programs (mainly Camp EAGR) have introduced me to some of my best friends and led to some of the most fun times I've ever had.


All of this being said, tomorrow is the beginning of Epilepsy Awareness Month. Most everyone knows that October was Breast Cancer Awareness Month; it's pretty hard to miss it. (At least it is in the US.) Something most people DON’T know is that November is Epilepsy Awareness Month. It is not highlighted nearly as much as breast cancer is, but there are a lot of people trying to change that.

To me, "Breast Cancer Awareness Month" seems to be more about raising money for research than it is awareness. With epilepsy awareness month my PERSONAL goal is not to raise money, but rather to educate and truly raise awareness.


To raise awareness, I have compiled a list of 30 lesser-known facts about epilepsy. These are facts that have been taught to me over the years, mostly by the Epilepsy Foundation, and that I feel are important for other people to know. The facts have been arranged in a specific order to start small, and eventually move to some more mind-blowing facts. They also progress with a very logical flow.

Each fact contains not only a fact, but a credible source of where the information can be confirmed. I will be posting these facts, one a day, on all of my social media networks as my "Epilepsy Fact of the Day", and they will be tagged with #EFOTD. Feel free to join me in my on-line activities by retweeting my tweets, reposting my posts on Facebook and Google+, or even by doing your own thing.

Just as breast cancer has a color, so does epilepsy; our color is purple. If you would like to join me in my quest to spread knowledge you can wear purple, put one of our purple ribbons as your Facebook, Twitter, or other online profile picture, get some purple lights for your light fixtures (yes, they do sell them!) or be creative in other ways. Just as pink does, purple seems to grab people's attention. So no matter what you do with it, people will be sure to ask you about it!


If you haven't gathered already, I am very open about my epilepsy and do not mind people talking to me about it. I actually enjoy talking about my experiences with epilepsy, I enjoy teaching people about epilepsy, and I hope that my actions (as small as they may seem) can impact some people. I hope to spread accurate knowledge, as well as get rid of some of the myths and misinformation that is out there, and I hope that you will help me.


I was born with epilepsy. November is epilepsy awareness month and I will be posting a "fact of the day" all month on my social media networks. Feel free to talk to me about it.