26 March 2014

Purple Day: Recognizing Epilepsy

Today is "Purple Day," which is when people wear purple for the awareness of epilepsy.
Purple just happens to be my favorite color, and I was going to get all fancied up for you guys but my arthritic joints just weren't going to let me today! So instead, I'll share some epilepsy knowledge with you all and include some purple throughout the post ;)

epilepsy awareness
It might be best to start off with an actual definition (taken from www.purpleday.org/) of what epilepsy actually is:

"Epilepsy is a seizure disorder. It is not a psychological disorder nor a disease and it is not contagious. The brain is made up of billions of nerve cells or neurons that communicate through electrical and chemical signals. When there is a sudden excessive electrical discharge that disrupts the normal activity of the nerve cells, a seizure may result."

A lot of people are surprised to learn I have seizures; evidently, most of them think that i) seizures only happen very rarely or to people being exorcised, and/or ii) that all seizures MUST be the type most often portrayed by the media, which is of an unconscious person straight out convulsing on the floor.

Epilepsy isn't that rare. In fact, ~ 1 out 26 people are affected by the condition.

Some epileptic seizures, like Petit Mal (or absence seizures), are fairly "invisible" to the general public and are compared to "trances" or staring periods.

Some, however, like the convulsive ones I mentioned earlier, result in a complete loss of consciousness, blue skin, and loss of bladder or bowel control. These--usually called Grand Mal seizures--are pretty scary.

Seizures are broken up into two groups: generalized--which ultimately means the whole brain is affected--and partial--which is kind of self-explanatory.

We believe I have "simple partial seizures" which can become generalized.
I'll go more in-depth of what my seizures are like another day (possibly this weekend), but I almost always first experience an aura--usually something visual--a dizzy spell, deafness in my right ear, a hot sensation, and just...a weirdness. I'm conscious the entire time (usually) which is a blessing and a curse, and yes, I usually have a mild jerking in my limbs.

The good news is it's been a couple weeks since I've had my last seizure (knock on wood), so I'm hoping my latest medicine is working! That's not to say I am cured from my seizures, but rather that they are managed. There is a difference.

Now, if anyone around you ever experiences a seizure, here are some INCREDIBLY important points to know. A lot of people still believe the whole "put something in the person's mouth" myth, and that can be incredibly detrimental!

  • If a person is having a seizure, you more than likely DO NOT need to call an ambulance. By dialing 911, you are actually just making us spend more money (sorry, I know you have good intentions). The only time you should really call 911 is if the seizure is over 5 minutes--time it!
  • Do not try to restrain the person--that's not going to stop the person's seizure! 
  • DO NOT put anything in the person's mouth. They cannot swallow their tongue, but they could potentially swallow whatever you just put in there.
  • Don't leave the person! Not even to go get extra help. If the person wakes up, they probably need someone there to just gently speak to them and stay with them until they are alert. 
A few other things you might want to take into consideration:

Flashing GIFs on your blog (especially those annoying Bloglovin ones); cracking jokes like, "Oh my god, she looks like she's having a seizure, she's so freaking mad!"; and completely excluding the idea of seizures/someone with seizures, are all possible things you might want to think about differently today. Even if it's just for today.

Some triggers like flashing Christmas lights, quickly cut scenes in movies and so many more examples (especially when it comes to movies), are hard to avoid, but when the public at least recognizes that something might be a trigger and either labels it or avoids it altogether, something great has been achieved.

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