Monday, November 8, 2010

Perhaps Ignorance is Bliss afterall

I've been thinking lately about Cece. She was just three. If you look at the Facebook page you see the wild curls and freckled face of a three year old. Unless you read further, you have no idea you are looking into yet another death from SUDEP. You have to read the page for the tears to start.

Cece had Dravet Syndrome. So did Reed. He was not quite 2 years old when he died. Dravet Syndrome is just one of the 40 different forms of Epilepsy.

If you don't know about it, it really is not so scary to know that 3 million Americans have Epilepsy.

If you don't know the whole truth, it's easy to walk away from stories and think "Phew, it's not my family or my child."

Once you know the truth however - every name, every smiling face, every one of these unexplained deaths by Epilepsy will rip out your heart. Put yourself in the shoes of these families, and the sobs grow stronger.

The truth is that no one knows why some people develop Epilepsy and some don't. The truth is, that even if your 4 or 12 or 27 year-old child has never had a single seizure in his or her life, by this time next year, you could be in the middle of this nightmare. Research cannot point to a cause for most cases of Epilepsy. So there's no way to say: "If you do this - or if you don't do that" you will never get Epilepsy.

My son asked me once "Will I ever get epilepsy mom?" There is only one honest answer: "I don't know."

There is no way to know that you, your spouse or your child won't have this condition next year - or even next week. And once you get it - the whole truth is - there is no cure.

And there is more, even harsher truth. If you develop Epilepsy and are one of the lucky 2/3 who can control the seizures with medication - there is no way to know when or if it will return. And sometimes the return is deadly. SUDEP is Sudden Unexpected Death in Epilepsy Patients. It's a fancy medical euphemism for "Oh Hell, we don't have a clue."

6 weeks after learning of the death of Danny Stanton, I heard a teacher say "Well, it's not like you can die from Epilepsy." And I began - 50,000 unexplained deaths annually from Epilepsy haunt me. Danny, Cece, Piper, Abigail, Chelsea, these are just the ones I know of - I want SUDEP to bother everyone - so if given the chance - I will tell you about it.

I will tell you Danny's story - and I will likely cry.

Lastly, I will tell you about my niece, Jennifer. She has Dravet Syndrome, just like Cece and Reed. Dravet is a catastrophic diagnosis. There is no hope for outgrowing seizures, and little hope for controlling them. At 4 years old, Jennifer was on a steady regimen of dangerous medications and had already undergone major brain surgery. She has a pacemaker implanted in the base of her brain. And still, trips to the ER for uncontrolled seizures don't stop. At 5 years old she began to turn blue during her seizures, and more than once her mom (my sister) had to administer chest compressions to her little girl while waiting for the paramedics to arrive.

So if you see me - and ask about the purple ribbon I wear, I will dispel your ignorance and tell you the truth. For the Month of November (International Epilepsy Awareness Month) I will be wearing purple - ask me why, and I will tell you these truths. I will destroy your bliss. I will no longer allow children to suffer and die because no one knows the truth and no one talks about it. It's time to know - about Piper, and Danny, and Cece, and Reed, and countless others.

I remember before Jenny was born when I knew nothing about children dying due to epilepsy. I too, believed that epilepsy couldn't kill you. Life was simpler. I didn't cry as much.

But it turns out, ignorance is NOT bliss after all. It's just ignorance, and when it comes to epilepsy, ignorance is fatal.

Get informed. Get engaged. Make a difference.

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