Thursday, March 26, 2015

Epilepsy Awareness Day -- Wear Purple and Get Educated About Epilepsy

Sophie's room is lavender, and I actually love the color purple, and we've been living epilepsy awareness every single day, so I didn't commemorate the day until this afternoon when I saw all the purple of my comrades and friends splayed out all over Facebook. My neighbor was wearing a purple tee-shirt and reminded me as well.

So much pain, so much frustration, so much anger and tenacity and strength and courage displayed.

So much love.

Here's a refresher:

  • Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer's, and traumatic brain injury.

  • You CAN die from epilepsy. While death in epilepsy doesn't happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is Sudden Unexpected Death in Epilepsy. While there is a lot we still don’t know about SUDEP, experts estimate that one out of every 1000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the US each year occur from these seizure emergencies.

  • Over 30% of those who have epilepsy suffer from refractory seizures -- epilepsy that does not respond to medication. All medications cause undesirable side effects, including irreversible ones.

  • Epilepsy can devastate families financially as well as emotionally. 

  • DO NOT PUT ANYTHING IN A PERSON'S MOUTH WHILE HAVING A SEIZURE. It's impossible to "swallow the tongue."


  1. Thank you for writing it out, so I could share it. ;)

    I wore purple socks today, since I've been doing laundry since the sun (and son) woke up today, and all my other purple things were in the dirties.

  2. Thank you, Elizabeth.

    Sophie is lovely.

  3. Freakin' CRAZY that I just 2 seconds ago posted on this same topic and used most of the same bullet points!!! We must have a shared mind today... hmmm, go figure ;)

  4. I never got that about not putting something in the mouth. Thanks for that bit of info.

    And, completely off the subject, every once in a while I click on those "you might also like" - they are great fun.
    I think I've been here since about 2012 ? But I love it when I click on and come up with a post that was from way back. Tonight I got "Reading before bed" from 6/2/10. OMG! Those pictures where sheer delight. Three little rascals playing together. I loved the one where Sophie is touching one of the boy's face, I can't remember which right this second. But she is so engaged, and they all three just glow. So sweet.

  5. I wonder where that "swallow the tongue" thing came from? I am wearing a green & purple shirt today, so even though I'm a day late, hopefully it counts. :)

  6. It's good info to have. I'm a nurse and I learned almost nothing about seizures during my training. Take care woman.

  7. Why didn't my comment show up?
    Basically, it said that I come here for so many things including education. You are a wonder in my life.

  8. Beautiful Sophie...spiritual purple, the 7th chakra bringing us to our universal connection - all is one. A perfect balance of red and blue, instilling both strength and dignity. Sending love and healing thoughts to you and your family dear friend.



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