Epilepsy Awareness is for Every Day, Not Only Purple Day

Purple Day Comes to a Close, but Epilepsy Awareness CAN’T End

Epilepsy Awareness with the Purple Day - Awareness goes Beyond one Day 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:

Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
  • http://katscafe.org jimmoody

    Seizures suck plain and simple. Seeing my guys have them and not being able to make them go away is the worst feeling in the world. I wish it was just me having them. I absolutely hate it…

    • http://katscafe.org Katrina Moody

      They do suck, sweetie, and I’m sorry you and the guys have to deal with them. But I’m so thankful to have you all!

  • Kendra

    I agree with you that there should be more awareness and educating the general public is important, but do we really need a “day” and a “color”? There are more than 365 illnesses and issues in the world. We don’t need to have illnesses competing for recognition days. I realize that there are good intentions behind all of this and it is important for people to know and try to understand the difficulties we face, however, the slogan, “It’s our life everyday” is really not a great one. There is way more to my life than epilepsy. I have done everything I can to make sure of that. When educating people, one of the things I really feel we should emphasize is just how diffferent each case can be. We also don’t want to begin conversations with long lists of all terrible things that can be associated with it. It only frightens them. We need to also share the things we CAN do. This is important for parents, family and friends to remember and especially for children who are diagnosed with epilepsy. Teach the the ways they need to be careful, but most importantly, teach them the things they CAN DO! Yes, there is a higher risk of injury and death. People with epilepsy know this, but that’s all the more reason we should live as full lives as we can and not just sit around thinking about, talking about, reading about and listening to all the “can’t dos”.

    • http://katscafe.org Katrina Moody

      I guess I agree and disagree with you a bit, Kendra. I 100% think that having a “day” and a “color” tends to downplay the fact that we all deal with different diagnoses. BUT, I still deal with people, often, who don’t understand anything about epilepsy. They still think that it’s not a big deal. They still think every seizure is exactly like the one they saw on ER a few years back, that it can be solved in a sweet 60 minute drama on TV.

      And the simple fact is, it IS our lives every day. Is it ONLY about epilepsy in this house? No. Not always. But some days it is – when my guy is going through a cluster of seizures throughout the day and he stops breathing for most of them, it’s all about epilepsy for us that day. When he doesn’t sleep (like last night) we worry about seizures the next day. When he gets upset we worry about seizures. Saying that our children’s lives are about more than epilepsy shouldn’t be an either/or thing. Our kids have a rare disorder. They have epilepsy. They have autism, one has cerebral palsy. Another is legally blind. Together, those diagnoses mean that our lives are different than many other families’ lives are. Different than, not harder or easier, just different than.

      I think the larger problem is that we do want people to understand what is going on with our children. Having a “day” or a “month” and a “color” might not be fair for all the millions of other disorders and it might mean some don’t get the same kind of attention (just let me talk about rare disorders sometime) but I don’t think that means you shouldn’t do it. We live in a highly visual world. If identifying a color and saying on this one day we will try to spread awareness and understanding – if that helps even one more person understand more about living with epilepsy, then I think it is worthwhile. I feel the same way about other causes and colors, days and campaigns.

      And if we aren’t to ever talk about it, if we aren’t to ever say, “this is hard” or “this sucks” or “I wish others understood what we went through” – how does that help anyone else to learn about the world around them? if we are to never say it kills 50,000 people a year, that 200,000 more are diagnosed every year … what should we say instead? That the vast majority of people with Epilepsy can go on to live a normal, full life? And the rest of us, the ones who don’t get that normal life with no major crisis – we aren’t supposed to say that the other side of the coin is that it can mean death, that it can mean regression, that it can mean my child has brain damage?

      I understand you don’t want these posts to scare someone who might be new to the diagnosis. But if you look back through the posts here at the Cafe, you’ll find a mix of good and bad.

      You have to take the good with the bad, and I just don’t see a lot of good about epilepsy. I can see the silver lining when my child finally reacts to a seizure med, when he finally makes it a month without a seizure, but I’m also going to be right there when the honeymoon period is over and we have a day full of breakthrough seizures.

      While I don’t want to annoy or offend someone, I won’t be the person who glosses over our reality because it might scare someone. I can see why you feel the way you do, but we’ve been living with this for 13 years now, and this is our life, every day. Do I hope my kids can grow up to be more than epilepsy? You bet. BUt that isn’t our reality right now.

      Thanks so much for your comments. I’d love to keep the dialogue going.

  • http://[email protected] Mandy

    Thanks for the awesome post. Although I didn’t get to fully enjoy my Purple Day because of a seizure, I love that the day existed and I loved to see all the pictures of my fans and friends and my “Epilepsy family” enjoying the celebration of spreading awareness. Purple day is a day that is not only for spreading awareness, but bringing to realization that we’re all in this together. Love you Kat. Wonderful blog!

    • http://katscafe.org Katrina Moody

      Thanks Mandy! I’m so sorry you had a seizure today! {hugs} Always in it with you, my friend! Always!

  • http://katscafe.org jimmoody

    Having about a half dozen different things going on with me I do like to know more about the different awareness things happening. I didn’t have that back when I was 15 and became a type 1 Diabetic. I only knew one person besides me that had it. If my parents would have been aware when I was born we could have found out about my Cerebral Palsy at an early age. If I would have had someone to talk to about the way I felt about stuff and how everything seemed different then I could have found out about my Aspergers earlier. I knew I had something wrong with my eyes early on needing glasses in 2nd grade but if we’d been aware, we could have found out about our rare genetic disorder Rieger Syndrome. And that’s just me. I could go on. When I see my youngest boy laying on the floor, turning blue, and all I can do is be there, to talk to him, rub his back, hold back the tears, and give his Diastat if his seizure lasts for more than 3 minutes. I want others aware.

    I love that Purple Day is out there and making others aware. So maybe the next time we go to Walmart and he has another seizure others will understand when we have him on the floor keeping him safe. Strange surroundings for him while in a seizure only makes it that much tougher.

    Awareness is key!

  • http://skipbinssydney.net Becca

    I feel sad knowing there are people suffering in this kind of pain. Although i am blessed that my family not suffering in any kind of illness, I am praying that God hear your prayers and be firm and keep your faith on Him.

    • http://katscafe.org Katrina Moody

      Thanks for the prayers, Becca. We believe in prayers around here.