Epilepsy Talk

Epilepsy and Education…Coming Out Of The Shadows | December 6, 2018

It starts in the playground.  A kid has a seizure and everybody freaks out.  Nobody knows what to do.

Maybe not even the school nurse.  Even though epilepsy first aid is a cinch.

It’s frightening to see a child seize and then, based on that fright, they think:

“I can’t deal with this.”

Some people still think epilepsy is contagious!

But kids are very impressionable, and if we show them there’s no reason to treat someone differently because of a condition that is uncontrolled, it’s very helpful.

They want to understand.  They want to help.  But first we must show them how.

Happily, most parents are vigilant, starting support groups, arranging fund-raising functions, bringing family, friends, and neighbors into the fray.

How else will their child lead close to a “normal” life?

Yet, sadly enough, at a recent high school health fair I attended, not one person knew what to do if a person had a seizure.

Some didn’t even know what epilepsy was!  That’s scary…

That means educating everyone you can: parents, nurses, teachers, employers, colleagues, EMTs, hospital staff, police, firemen, public personnel, prison wardens (I’ve heard some very grim stories), judges and yes, legislators.

More frankness would, of course, improve conditions for all of us who have epilepsy.

If more well-known people with epilepsy dared to stand up and talk about how they have achieved what they have — despite having epilepsy — it would help all those who live with the stigma of  discrimination.

While many public figures with cancer are forthcoming about the illness, epilepsy has never found an icon like Michael J. Fox, whose openness about Parkinson’s disease helps raise tens of millions of dollars a year for research.

Yet, despite the number of people with epilepsy — the disorder affects more Americans than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined  — epilepsy still carries the stigma of ignorance which hampers care, public recognition and the ability to raise money for research.

Even among the well-educated, people don’t like to talk about epilepsy!

“There is an ongoing, significant embarrassment level about it,” said Dr. Orrin Devinsky, director of the Epilepsy Center at New York University.  “At some level, our society needs to wake up and realize it’s just another neurologic disorder.”

What can we do?  Be pro-active on every level.  Get legislators to institute a public program which would include:

* More educational resources for schools and special resources for classrooms with students who have epilepsy to inform teachers and  classmates…

* Funding for a public service education campaign…

* New guidelines for acceptance and/or denial of disability benefits for people diagnosed with epilepsy…

* Resources for the workplace, educating superiors, coworkers…

* Clarification and enforcement of ADA in regard to seizure disorders.  

By informing the general population that seizures look more dangerous than they are, and that effective treatment makes seizures more unlikely to occur — one can hope that conditions will improve for those of us with epilepsy.

The bottom line? 

Life will always be full of challenges, whether it be epilepsy, cancer, heartache or whatnot.

We cannot escape it, only deal with it.

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Resources:

http://epilepsyfoundation.ning.com/main/search/search?q=educating+people+about+epilepsy

http://epilepsyfoundation.ning.com/group/epilepsyfriends/forum/topics/epilepsy-discrimination

http://www.gloucestertimes.com/lifestyle/x546181037/Changing-the-publics-perception-knowledge-of-epilepsy

https://www.epilepsy.com/make-difference/public-awareness

https://www.epilepsy.com/living-epilepsy/our-programs/take-charge-classroom-epilepsy-education-programs

https://www.ncbi.nlm.nih.gov/books/NBK100609/

 


10 Comments »

  1. Thank you! We need to make all the noise we can!

    Liked by 1 person

    Comment by catsissie — December 7, 2018 @ 2:39 AM

  2. Reblogged this on catsissie.

    Like

    Comment by catsissie — December 7, 2018 @ 2:40 AM

  3. Thank you!

    Liked by 1 person

    Comment by Susan — December 7, 2018 @ 10:16 AM

  4. Hi Phyliss, Once again a great article of knowledge. I’d like to add another reason why it’s important for all to know and understand seizures. And that is what if it happens to you, the reader who doesn’t have seizures? Would you know what you were experiencing. Of course not if one doesn’t learn about seizures. Like me, i had seizures happening to me before they found my brain tumor. I had no idea what they were or from what. They were your small seizures, like my fingers would get numb, or I’d fall, for no reason, one of my legs would just give out. And then finally the Grand mall happened where i went haywire and lost consciousness. Even then i thought all it was was a faint spell. Had i know what seizure were, i could of went to my doc and explained it better. And it wouldn’t of went as far as a grand mal. I called the oncall nurse and told her about my faint spell, luckily she told me to come to the ER right away, whereby they found my tumor.

    The better informed one is the better decisions they can make.

    Liked by 1 person

    Comment by Zolt — December 7, 2018 @ 11:00 AM

    • I think understanding your own seizures is the first key, as you say, Zolt.

      Only after that can you expect people to act and accept.

      By chance, did you ever keep a daily diary? Or were you just too far in the dark about your condition?

      I’m asking because a friend of mine also had unknown seizures which lead to a brain tumor diagnosis and surgery.

      She was not as fortunate as you and and suffered sustained brain damage from a nick to her executive functions.

      But slowly, she’s come back. After 10 long years of grit and determination.

      Like

      Comment by Phylis Feiner Johnson — December 7, 2018 @ 11:15 AM

  5. No, I was to far in the dark to know what was happening to me. And when trying to explain to doc, he looked at me funny and told me to try staying away from dairy products, since i liked them so much. 🙂 Like i say i didn’t know what seizure were, other then the grand mall which i thought could never happen to me. Even when it did happen, i didn’t recognize it as such. I never had any education on seizure that i can remember, so if it happens to you and you have never had one, it’s hard to understand what is going on. And trying to explain a seizure to a doc may seem like one is insane or something.

    Liked by 1 person

    Comment by Zolt — December 7, 2018 @ 11:30 AM

    • Too bad some of the symptoms were never captured in a photograph.

      But I understand, YOU didn’t know and the docs were too dense to probe further.

      Like

      Comment by Phylis Feiner Johnson — December 7, 2018 @ 12:14 PM

      • Here is a couple of good rules for any doctor to follow.

        If your long time patient hardly ever comes to you for help but now he/she is, then there must be a problem.

        Most of all, if they complain about headaches and they tell you they never before in their life experienced headaches like these, it’s a good idea to get them a head CT scan.

        Early mornings i would have a horrible headaches, problem was i didn’t always have them i had them like once every 3 days or so. That’s when the tumor grow and it was so large already that it would give me a visual aura where a crescent moon shaped light would move across my vision. And then i’d get a horrible headache. The time i had the grand mall, afterwards i had the worst headache in my life, so bad i called the boss to tell her i needed to leave for the day. That night i called the advice nurse.

        After my surgery i got all the emails, tech docs and everything i could about my surgery. The surgeon mentions areas were it was very hard to get it off of my brain it was so stuck to it. That is also the same area where my seizures start. Right after surgery, i noticed i couldn’t move my right arm, that got me scared, but the surgeon came in and put some drug into one of the many IV’s in me and back to life came my arm.

        I’m sad to hear about your friend, sounds like she had an area were hers was very difficult to get out as well. Does she still have seizures? Are they bad seizures? Can she function without help? And how old was she when they found it? I was a young 38.

        Liked by 1 person

        Comment by Zolt — December 7, 2018 @ 1:31 PM

      • Good thinking. GREAT rules.

        You would think they’d have a clue.

        As for my friend, she had surgery just before her 50th birthday and celebrated her birthday as a vegetable.

        That was followed by two years of intense physical and occupational therapy for which she had to sell her house and all worldly possessions.

        She is quite wonderful now (comparatively speaking). And, ironically seizure-free.

        But she obviously will never be able to go back to her former occupation (psychotherapist) or her former life.

        Like

        Comment by Phylis Feiner Johnson — December 7, 2018 @ 5:15 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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