Official November Post

(as opposed to all those other November posts)

November is Epilepsy Awareness Month.   You didn’t remember that from last year?  Good thing I’m posting again.

Last weekend when we were up North, I was speaking with someone who used to keep horses, chickens, and goats.  I know very little about horses, less about chickens, and less than nothing about goats that doesn’t involve curry recipes.  Fainting goats came up.  I had never heard of them, asked her about them.  As she described how they stiffen and fall over, I thought to myself, sounds like a form of epilepsy, but didn’t say it out loud.  I’m pretty sure any animal with a brain can have a seizure.  But what do I know about farm animals? I’m not even sure I’ve ever been next to a goat, fainting or otherwise.  She then said she believes the fainting is a form of seizure disorder.

Meet Bambi, the Pygmy Fainting Goat

Meet Bambi, the Pygmy Fainting Goat (Photo credit: pmarkham)

Well , now I was able to join the conversation.  Turns out the woman used to have someone in her life who had epilepsy, and she made a statement to the effect of, well it isn’t like anyone can die from it.

Not true.  People can and do die from seizures and epilepsy.  Thousands of people.  In countries with modern medicine and purple ribbons.  There is SUDEP– sudden unexplained death in epilepsy, there are accidents related to seizures (drowning, falling, burning, choking, etc), there is status epilepticus (prolonged seizures that don’t end/resolve on their own), deaths due to treatment, deaths due to underlying disorders if the epilepsy isn’t idiopathic, and suicide related to comorbid conditions like depression.

This woman hadn’t known this information.  She didn’t know epilepsy is actually a spectrum of neurological disorders, she didn’t know there are many types of seizures/ways seizures can present themselves.  I also think she hadn’t understood that 30% of people with epilepsy are not “well controlled” on their medicines.  In other words, they’re doing everything the doctors say to do, taking meds, trying to avoid triggers, and still have uncontrolled seizures.

This was a great opportunity to educate and promote epilepsy awareness.  I did, and I think she and the other woman with her were listening.  No ribbons (which I don’t think anyone pays attention to anymore anyway, 43,000 disorders and diseases sharing 12 ribbon colors–I made up 43,000–just in case you weren’t sure), no banners, no jazzy PSAs, not even any goats; just an opportunity taken.

*Some, even most, children and adults with epilepsy have seizures that are well controlled on their medication/treatment plan.  That doesn’t mean epilepsy is “no big deal.”  It can be a very big deal.  And you should care, because anyone can have a seizure, anyone can develop epilepsy.

What medicine(s) works for one person doesn’t necessarily work for the next. Whether they work or not, they often have horrendous and lasting side effects.   Some people are finding tremendous success right now with certain medical cannabis compounds/cannabinoid.  I’m guessing it’s like the other meds/treatment options, it will work for some and won’t work for others.  Of course, everyone who wants to have that shot of success will have to be belittled and inspected first, forced to fight their governments and maybe even move.  Sigh.

EEG fragment

EEG fragment (Photo credit: Wikipedia)

But that’s another post.

And by the way, if your dog (or your goat) has epilepsy, and you’re speaking to someone whose child has epilepsy, don’t tell them you know just what it’s like.  You don’t.

Epilepsy Awareness.  Epilepsy Sucks, pass it on.

4 comments

    1. Thank you for sharing that, Joanne. Epilepsy affects nearly 50 million people worldwide. In the US, it’s the third most common neurological disorder–yet no one talks about it, there’s still a lot of stigma attached. The only thing I ever hear in the the general media/public are jokes about tonic clonic (what used to be called grand mal) seizures.

      With hindsight, I know Flower Child was seizing long before she was diagnosed, because I had never heard of partial seizures, and the ways they can present. One theory says the more the brain seizes, the better it gets at seizing. 😦

      Like

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