Why It's Critical for the Epilepsy Community to Raise Awareness

We were with three other couples, and randomly enough, one of the couples knows someone with epilepsy, another couple (us) has epilepsy, and a third couple’s child is currently testing for newly emerging epilepsy… three out of the four couples somehow touched by epilepsy. And that’s not why we were together… the conversation unexpectedly ended up there. So I say to myself. Why? Why is the epilepsy community – one affecting all races, ages and socio-economic levels – not in the forefront of medical issues when it comes to the general population’s opinion?

Other relevant stories:
• Can Epilepsy Come Back After Years
• Does Epilepsy Go Away
• What Are the 12 Types of Seizures 

 

We, the epilepsy community, are sorely under-recognized in general societal knowledge and funding, yet we outnumber cerebral palsy, multiple sclerosis, muscular dystrophy and Parkinson’s disease combined.

Combined.

We, in our community, have the same number of deaths per year as breast cancer, and yet many friends of ours are barely, if at all, somewhat knowledgeable about epilepsy and seizures. I’m not shaming people. I’m bringing to light the lack of emphasis, the lack of education, the lack of importance, placed on a disease that affects three million people in the United States alone. 65 million in the world. Count that. Soak it in. Seriously. Stop reading and stare at those numbers.

Here’s a perfect anecdote symbolizing the lack of epilepsy exposure: While watching football one day, my son (who’s 4) said to us, “Why are they wearing pink socks, Mommy?” And I thought – for a good reason – to raise awareness of the prominence of breast cancer. An incredibly widespread and worthy cause… which I proceeded to explain to him.

“Then why don’t they wear purple socks, too?”

Damn, he’s intuitive. I smiled.

And I responded, “I don’t know, baby.”

But I do know. Because Epilepsy hasn’t “branded” itself. We don’t have a Susan G. Komen. It doesn’t inspire camaraderie to support epilepsy if you aren’t affected. (Yet.) It isn’t a money maker, attention-grabber, well-recognized cause. (And I make these comments without bitterness, simply stated logically.) Where’s the draw in supporting epilepsy? And that’s why I admire foundations behind breast cancer, pediatric cancer, autism… They’ve created it. Established the prevalence. Made it one hell of an awesome cause to get behind. I’ve not been affected by any of those three examples, but you can bet I know the colors of the ribbons, certain statistics and characteristics associated with each one, participated with reverence in their walks… been behind each of those causes at some point in my life.

So get behind me. Actually, not behind me… next to us. Stand with my husband the caretaker and my son the survivor. Stand with my mom and my dad. My original observers and participants in epilepsy’s violence and the unknown. Stand with the newborn seizing from the moment of birth and the toddler spasming in between gasps of breath. Stand with the child who can’t speak, and the adult who’s still never walked. Stand with the invisible. The visible. The aching. The screaming. The silent. We are here. We are here. We are here. Stand with us.

What can we do to make others see it? It’s a serious question, really. How can we bring the knowledge to the public and present a more effective approach? Make you believe in the cause as you do so many others that may or may not have touched you personally?

I type furiously out of passion, motivation and living. Living it… And through tears. But not tears of sadness or pity. Of love. Of respect. Of wanting something so badly… Of frustration.

We’re all worth it. You’re worth it. Every cause is “worth it.”

But here I’m writing about mine. I’m putting it in your face because frankly, that’s how people notice, and we haven’t done enough in your face. And we need to be. Up in your grill 24/7. Because, dammit, the lives affected by epilepsy are worth it.

So here it is: I’m one in 26 people diagnosed with epilepsy.

I have a disease causing as many deaths every year as breast cancer.

More people are diagnosed with my disease, epilepsy, than Parkinson’s, cerebral palsy, muscular dystrophy and multiple sclerosis combined.

The NIH (National Institutes of Health of the United States government) spent a total of $161 million on epilepsy for 2017, compared to $711 million for breast cancer and $243 million for autism.

And one-third of epilepsy cases are uncontrolled.

Put that in front of as many faces as you are able.

We are here.

Now you know that. If you didn’t, that’s OK… You haven’t had the opportunity. But you do now.

I will teach you. They will teach you. We will teach you.

It’s an overwhelming yet unacknowledged magnitude, but we are visible now. And although you won’t always see it on my face or in my disposition, I am here. I have it. So let me educate you. Please.

It’s time – past time – we put our cause in the forefront. If we don’t, who will?

OK, I’ve stepped off my soapbox. (Full disclosure, I still have one foot touching it…) Let me leave you with this. One day on Instagram, I came across the quote: “Some people confuse crazy with passionate. Let me be clear, I am bat shit passionate.” (Rebel Circus) That’s it. I am. I am blood-pumping, heart aching, excited for the future, determined to educate and eradicate passionate. And I know I’m not alone.

My son and I want to see purple socks this November (Epilepsy Awareness Month). We want “bat sh*t passionate.” Seriously.

Let’s get busy.

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