Tuesday, March 25, 2014

Purple Day For Epilepsy Awareness, Wed. March 26th

My best friend from college has a preteen daughter who has been diagnosed with Childhood Absence Epilepsy.  In my friend's words, "For anywhere between 5 and 15 seconds, she will suddenly become unresponsive--she will stop talking mid-sentence and stare, and then pick up where she left off.  If she is walking she will continue to do so but will likely change directions and wander."  These seizures make it impossible for her to ride a bike, ski, or swim safely, and they (along with the side effects of some of the first medicines she tried) have caused her to fall behind in school as well.  

I received the following in an email from my friend a few days ago.

"This Wednesday, March 26, is Purple Day, the international day for epilepsy awareness.  Here's the story, from http://www.purpleday.org/ .

How Did Purple Day Start?

Purple Day was founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, with the help of the Epilepsy Association of Nova Scotia (EANS).
Cassidy chose the colour purple because in some cultures the lavender flower is often associated with solitude, which is representative of the feelings of isolation many people affected by epilepsy and seizure disorders often feel. Cassidy's goal is for people with epilepsy everywhere to know they are not alone. 

To learn more about Cassidy and Global Purple Day Partners EANS and The Anita Kaufmann Foundation (AKFUS), please visit the About Us page."


She asked us to wear purple tomorrow in solidarity with her daughter, which I will gladly do.  Passing this message along in case any of you feel inspired to do the same in honor of a particular loved one or in general.  And Elizabeth, I know this must seem a terribly simplistic and not particularly helpful gesture, and I can't argue with that.  But I will do it anyway, because my friend asked for my support, and because perhaps increasing awareness with bring more resources to bear on this miserable disease as well.


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