Epilepsy Talk

Epilepsy and Education…Coming Out Of The Shadows | May 27, 2021

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 are less dangerous than they look, 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:

https://www.everydayhealth.com/epilepsy/overcoming-the-stigma-of-epilepsy.aspx

https://health.usnews.com/health-care/for-better/articles/relieving-the-stigma-of-epilepsy

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/

https://www.epilepsy.com/living-epilepsy/schools-and-seizure-preparedness

https://www.cdc.gov/healthyschools/npao/epilepsy.htm

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0150014

https://www.epilepsy.com/article/2014/3/teens-epilepsy-living-stigma-unspoken-battle


12 Comments »

  1. Oh, Phylis – awesome topic. We talk about this so much at our support groups. The stigma is so real. The facts are so real scary. It floors me that elementary school students hear that someone from the Epilepsy Foundation (or another epilepsy medical group) is coming to give a presentation and inevitably someone will fall down on the floor and start shaking and some of the students will start to laugh. Thank God that from very early on the employee from the Epilepsy Foundation can explain what epilepsy is, and what is going on in the brain, and how it can affect the body. Also, the school nurse will usually pick up something medically about how to respond to the situation. Teachers are usually willing to learn another medical fact. So, yes, when the literal education is brought out when children are young, many benefit for the rest of their lives. My children had to teach their friends about epilepsy. That’s how far behind we were in Tennessee at that time. The stigma factor about epilepsy has been reduced so much in the schools that let someone from the Epilepsy Foundation come in and give a presentation. The ignorance factor can certainly raise the fear factor. And that just gets magnified as we age into all of those other contexts you brought up. Where is our Michael J. Fox? I guess it is up to all of us to say that we have epilepsy and to bring it out more into the public. Wonder what others will have to write about this excellent topic? Thanks

    Liked by 1 person

    Comment by George Choyce — May 27, 2021 @ 2:01 PM

  2. What a good idea, Phylis! Show up at health fairs with your soapbox under your arm, prepared to educate. I particularly like Devinky’s phrase, “just another neurological disorder.” It reminds me of the instructor in my martial arts class saying that we would practice our knife take-aways until we could say, faced with a knife, “Oh, it’s just a knife.”

    Liked by 1 person

    Comment by HoDo — May 27, 2021 @ 2:28 PM

  3. Good idea to let everyone know. Lord knows I’ve tried. I’ve been a speaker at schools, fundraisers, adult clubs and I’ve tried to make as many people aware of the harm it brings to people physically and mentally. I read them my first poem so they see the obstacles we face but how some of us see the right side of research and get a second chance at life through surgery.

    Thank you for spreading the word!

    Liked by 1 person

    Comment by Ed Lugge — May 27, 2021 @ 2:45 PM

    • I went to a Lion’s meeting (or some such community “charity” organization) and talked about Epilepsy Myths and Facts, followed by the Epilepsy Hall of Fame.

      Maybe I goofed, or maybe I chose the wrong subject, because they kept chomping on their rubber chicken lunch as I spoke, with no comments and/or questions.

      I felt as big as an ant as I crept out. Someone could stomp on me and nobody would notice the difference.

      Like

      Comment by Phylis Feiner Johnson — May 27, 2021 @ 2:53 PM

      • I know what you mean. I always tried to find an interested face or two then keep a constant eye contact with them.

        Liked by 1 person

        Comment by Ed Lugge — May 27, 2021 @ 4:24 PM

  4. I think most people are introduced to seizures when they have one. That was the case with me. Even when i had a grand mal seizure for the first time, i thought it was a faint spell, little did i know. I had never seen anyone have a seizure, but i had heard of it, and knew it was something horrible. Even the smaller seizures before my first grand mal, i didn’t know what they were, like drop down seizures, where the power in my legs went and i’d fall.

    My last 3 seizures were very brutal, to the point were it pushed me to the ground, rubbed my face on the carpet, then either tried to break my arm, or my neck giving me such pain i would faint. Then i’d wake in my bed thinking how the hell did i get back in bed. Maybe my brain went but the subconscious was there. These happened at the end of last yr, when i was forced to reduce my meds since i hadn’t any medical coverage. Now i do and i’m back on the pills and instead of the capsules i’m taking the pill form. This seems to be better because instead of my every 2 months or so having a seizure, well now i havent’ had one for 5 months, closing in on 6 months soon. Knock on wood. Although i’m worried how will the next seizure treat me, will it kick my ass, or will it be the normal type where it ends just in my arm. Life is tough, but when one has seizures, it’s a LOT tougher.

    Liked by 1 person

    Comment by Zolt — May 27, 2021 @ 3:05 PM

    • My first seizures were absence seizures, so they were pretty easy to ignore. (No questions. No answers.)

      But the drop seizures were kind of obvious. Instead of acknowledging them, my family said I was a klutz — as I walked into walls and fell down the stairs.

      Others thought I was just stupid, or lazy or defective. Not one soul asked or tried to find out what was going on with me or why I was having seizures.

      (Did they even know what a seizure was? Search me.)

      However, whine as I might, nothing close as dramatic or radical as your experiences happened in my sphere. Sure, I moved on to grand mals, but I learned to hit the floor before the floor hit me. Therefore the grace of my auras went I.

      Dilantin was pretty useless. It just made me sort of comatose, but didn’t exactly solve the problem of the seizures.

      And finally, there was Lamictal. And I’ve been 99% seizure-free for more than 10 years. Trying to help (make?) others understand.

      Like

      Comment by Phylis Feiner Johnson — May 27, 2021 @ 3:56 PM

      • Hi Phylis, How old were u when someone figured out your problem were seizures?

        It’s interesting that ur seizures also started small and increased. Same with mine, mine started by having small seizures in my finger tips, Than it increased to more fingers, and within like 2 months the whole hand was tingling, numbness and pins and needles feeling. Then shaking started to happen, and a year and a half later the whole arm was doing it. I thought it was keppra that was making them worse, since every time i told my doc, all he would do is increase the amount of keppra i was taking. Then one day i had a grand mall going home from work on the highway and for me the grand mals do not give me an aura, where as my regulars seizures do. Strange. While i worked my seizures where monthly.

        Lamictal, I like to refer to it as lamotrigine, did not work for me, well that’s not true, in a way it did, it was the first drug to reduce my seizures from one a month to every other month. I was so happy, but the seizures i was having where bad about as bad as the ones i described early, my last 3 seizures. I told my doc about it and he increased my dosage to the max, that caused me shortness of breath. So i needed off this drug asap. Which i was weaned off and on the Gabapentin, that has been my drug choice, on it i was still having seizures every other month and my seizures would stop in arm when i had one, granted i was taking my emerency meds (Ativan) when i get my aura. I was also able to manipulated the drug to cause my seizures to happen in the mornings. What a relief to have them in the mornings, i’d call into work and tell them i had one and won’t be in for the day. Only reason i had bad seizures i think is because i reduced my drug intake from 6 pills per day down to 1 or none, since i was running out of meds and had no medical coverage at the time. ugh.

        Liked by 1 person

        Comment by Zolt — May 27, 2021 @ 8:19 PM

      • Well Zolt, you certainly went through the medical maze.

        I went through the ignorance faze. Although my accident — a friend’s brother decided to be real smart and trip me up on the ice rink while I was speed skating. Straight into the boards, I went. Head first.

        I wasn’t diagnosed until two years later. Considering my step-father was a surgeon and my step-mother was a psychologist, the amount of denial was amazing.

        Finally it was my father (an engineer who got tired of me breaking everything) who took me to an ace neurologist. Not that you had to be a brain surgeon (!!!) to know that I had epilepsy.

        And from there, things went from bad to worse…

        Like

        Comment by Phylis Feiner Johnson — May 27, 2021 @ 9:29 PM

  5. Thank you Phylis

    Liked by 1 person

    Comment by Flower Roberts — May 27, 2021 @ 3:08 PM

  6. This is a great write up Phylis thank you! Lucky for me one of my really good childhood friends had seizures and he taught me what to do right away! So if he would have one in class, think we were 12, I would immediately just protect his head, try my best to calm him down, and completely ignore the teacher when she would tell me to get back in my seat!

    As well, there was another kid in the neighborhood that had them, a bit younger than me, but a wonderful story with him happened when he went to a San Francisco Giants game and about halfway through the game began to have an episode! The amazing part of the story was that the great Kevin Mitchell (great hitter and outfielder) immediately called time out and ran up into the stands to be with the family and wouldnt go back to the field until he was okay!

    Our heroes are out there!! We just have to be patient and keep educating!! Another great one Phylis, thanks!

    Liked by 1 person

    Comment by Aaron Holmes — May 27, 2021 @ 4:54 PM

    • Aaron, what a wonderful story!

      And poo on your ignorant teacher, who failed to realize you were doing something good and necessary.

      Like

      Comment by Phylis Feiner Johnson — May 27, 2021 @ 4:59 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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