Being Aware of Epilepsy

Being Aware of Epilepsy

We’re 6 days into my purple lights and I can’t help but think of all that’s going on in the world.  I wonder if the purple is lost somewhere… if people make the connection of purple representing epilepsy; if anyone is even thinking about epilepsy.  About awareness.  I wonder if people realize that their neighbor, friend, or co-worker could have epilepsy.  That epilepsy is not necessarily “visible”; that epilepsy can happen to anyone.  At any time.  Anywhere.  Even to them.

For my part in Epilepsy Awareness Month, I offer 6 posts from the archives plus a bonus:

  1. So Mom and Dad keep up the purple lights.  So others know.  So they can continue to support me.  To remind everyone that epilepsy is not as the invisible disability everyone thinks it isEpilepsy Is Not Invisible

  2. Laughing, I say to C, “Ha!  Can you believe it?  He’s snoring!”  At the same moment, I looked down at him.  From my angel, his eyes appeared closed; a slight movement and, I saw that J’s eyes were open.  Fixed.  His mouth was fixed as well. He was drooling.  My First Experience With Epilepsy – A Mother’s Tale

  3. There’s an amazing amount of bricks lying upon my chest. Heavy. Un-moveable. Unbreakable. Seemingly uninfluenced by any foreseeable changes. No ‘break‘ long enough. No time coming up showing promise. The bricks don’t come alone. They come with tears.  I Can’t Maintain The Facade That All’s Well

  4. …and with this report from C, my wall cracks just a little more. My voice quivers, and all I can muster is, “I know. I know. But I hope he’s not too tired. I hope he doesn’t give up.”  Is It Too Much To Ask a Child To Find Strength?

    EEG - Visit with daddy

    Father and Son during an EEG

  5. I’m not happy. In fact, I’m f#(&ing pissed. Not positive. I refuse to see the positive side of the “special needs” life at the moment. In particular, I cannot fathom what good is coming from my son’s epilepsy. My son’s INTRACTABLE, UNSTOPPABLE EPILEPTIC FORCE that swings machetes at what’s left of his mind.  A Holiday In Pain

  6. Sudden Unexplained Death in Epilepsy (SUDEP) accounts for 10% of all Epilepsy related deaths; 85% of these fatalities occur between ages of 20 to 50. SUDEP incidence is approximately 1 in 1000 people with Epilepsy annually more than 10 times the sudden death rate found in the general population. So as you can see now today is the “Time to Talk About It” we must bring it to the forefront and make everyone aware that Epilepsy does kill.  Sudden Unexplained Death in Epilepsy – It’s Time To Talk About It

And for lucky number 7, a post from Nathan’s Voice looking at the link between Autism and Epilepsy.

As mentioned above, the CDC recognizes epilepsy as a “co-occurring condition” with autism spectrum disorders. Epilepsy, of course, is not the only co-occurring condition recognized.  Autism and Epilepsy Awareness Month

Please feel free to leave a link to your favorite epilepsy post
from this site or another below for others to read.

By | 2013-11-06T09:00:23+00:00 November 6th, 2013|Categories: Epilepsy|Tags: , , |0 Comments

About the Author:

Gina St. Aubin

Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate.

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