Purple Day Comes to a Close, but Epilepsy Awareness CAN’T End
I purposely waited a little while today to start posting for Purple Day today, wanting to make a point that Epilepsy Awareness … is part of our lives, every day. While Purple Day is important and I stand proudly with others to celebrate and spread awareness on this day, we can’t use this occasion to ignore the fact that Epilepsy is a reality that our family … every … single … day.
Not just my family, but millions of families deal with this reality. We watch our children hurting, scared, and confused. We watch our children regress. We watch our children lost consciousness … stop breathing … turn blue.
Over 50,000 people die each year from epilepsy and epilepsy-related causes, as my friend Jessica Smith compiled and reported last year on her blog, Living Well With Epilepsy. 50,000 people
SUDEP – Sudden Unexplained Death in Epilepsy
In the back of my mind, in the back of so many other parent’s minds, is the fear of SUDEP, or Sudden unexplained death in epilepsy. I watch one after another family in my Epilepsy groups from week to week deal with sudden death. I’ve written about our own experiences with Logan’s seizures as he’s stopped breathing, as I’ve had to give him rescue breathing … you should never see your child turn blue. NO parent should ever see their child turn blue, should lose their child to a disorder as insidious as Epilepsy.
Regression, Disappointment, Confusion – the Real Effects of Epilepsy
Many people still believe that seizures don’t kill, that those living with epilepsy just have to deal with the occasional seizure. They might picture the stereotypical Grand Mal seizure (made infamous on TV but far from realistic). The reality?
- Those with epilepsy lose skills because of the trauma to their brains, caused by severe and/or repeated seizure activity. (Unsure? See this poignant post by Cheryl over as a guest author at Special Happens, in “I Don’t Want This Life for Your Child”)
- Those with epilepsy deal with additional trauma as a result of falls.
- There is no known cause for some 70% of those diagnosed with Epilepsy – more questions than answers for those families.
- Epilepsy is often diagnosed alongside other disorders, like cerebral palsy, autism, and tons of other diagnoses.
- Being diagnosed with Epilepsy shortens your life expectancy.
- There is NO CURE.
Fight for Purple Day, Epilepsy Awareness, Understanding, Compassion, and Empathy.
When you understand the devastation of this diagnosis, the magnitude of its effect, how can you not want to support epilepsy awareness, not just on Purple Day, but every day? Right alongside the millions of us dealing with Epilepsy. We don’t get to take a day off. Our fight doesn’t end at the stroke of Midnight.
Join us, in ensuring that Epilepsy Awareness is for EVERY DAY, not only Purple Day, won’t you?
Join the Epilepsy Awareness, More than a Day, A Choice Linky: