National Epilepsy Awareness Month

5 11 2012

The whole month of November 😀 If you see lots of lavender/purple, it’s the ribbon color for epilepsy.

     My now eleven year old daughter was diagnosed with epilepsy when she was eight. Her first seizure was one of the scariest nights of my life. We didn’t know she’d had a seizure, we just knew we had a daughter we couldn’t wake up. She was checked out at the children’s hospital in town – shout out to Children’s Mercy! – and they determined that she’d most likely had a seizure.

FACT ONE: A very high number of the population will have one seizure in their lifetime (I want to say 90%, but my stats are a little rusty).

Because of this, they told us to keep an eye on her. Maybe this was her one.

It wasn’t.

Within a month, after several more seizures, trips to the neurologist, and a handful of tests, she was diagnosed with Epilepsy.

FACT TWO: Because of great medical advances, the medical community has gathered more information on seizures (but not nearly enough). There are now many different names for types of seizures depending on where in the brain they originate.

Or sometimes, they’re not specific, like my daughter’s. She was diagnosed with general seizure disorder, and has two different types of seizures.

FACT THREE: Grand mal and petite mal are no longer used as seizure labels in the epilepsy community, because doctors can be more specific due to advances in science.

My girl has tonic-clonic and absence. In the older terms, grand mal and petite.

In August she reached her two-year anniversary of being seizure free. Under her doctor’s supervision, we were able to wean her from her anti-seizure medication. So far, so good. We have to keep a close eye on her until the end of the year. At that time, if she’s still seizure free, her doctor said we can say my daughter’s in remission.

Not everyone with epilepsy, or with a child that has it, is as lucky. I know we’ve been very blessed. Things could take a turn for the worst at any time. I continue to hold out hope and pray that things continue to go well.

FACT FOUR: About 30% (and again, my stats are rusty) of the epilepsy population is medicine resistant.

Sometimes it takes multiple medications to control the seizures. Sometimes medications don’t work. These are the patients who most often consider surgical means for controlling seizures. Sometimes surgical implants, other times surgery on the brain itself.

For these families, I continue to hope and pray that more medical and scientific advances will happen. Sadly, Epilepsy research is underfunded. Until Epilepsy has more well-known people championing the cause, it will continue to be underfunded.

FACT FIVE: There are the same number of epilepsy cases diagnosed each year as there are breast cancer.

Didn’t know that, did you? Breast cancer receives twice as much funding for research. I understand these are our moms, daughters, aunts, nieces, grandmas, granddaughters, and friends. I’m not suggesting we take research away from them.

We need to raise awareness for epilepsy research. Our children, our elderly, and our soldiers are no less important than the women in our lives.

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One response

6 11 2012

Lavender hair?

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