Epilepsy Talk

Epilepsy and Education…Coming Out Of The Shadows | February 2, 2011

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.

Resources:

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

http://www.epilepsy.dk/Handbook/Living-with-epilepsy-uk.asp

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

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

http://health.nytimes.com/ref/health/healthguide/esn-epilepsy-ess.html


29 Comments »

  1. Surprisingly, I did not have the problems that you mentioned.

    I do agree that others have the problem of scaring people with a seizure. It is a real problem in our real world. We must remain out of the closet anyway. How else are people going to learn about our seizures? I am glad that I have neighbors who do understand my health problems.

    Like

    Comment by ruth brown — February 2, 2011 @ 10:05 PM

  2. I agree that we need to educate other students, professors and just people in general on how to properly react when a child is having a seizure.

    It would be awesome if there was some kind of online educational iframed app that students could use to learn about how to properly deal with these situations. The app could be interactive as well by allowing students to enter their main concerns about students seizing into a questionnaire and then a list of resources explaining how to handle specific situations could be automatically generated. There could even be a facebook app to attract more students since so many of them are on there anyway.

    This isn’t necessarily a new idea, many schools offer similar tools, but they’re computer based instead of internet based – meaning, you can’t access the tool from anywhere at any time like you could if you had an online app.

    There’s already a similar app for businesses: http://www.facebook.com/pages/Mindflash-Advertising/180033020422?v=app_4949752878&ref=ts

    Just an idea, sure it could be helpful for students, professors and many others.

    Like

    Comment by Cory — February 3, 2011 @ 1:28 AM

  3. Hi Cory! Are you talking about http://www.reachepilepsy.net?

    They’re actually a research group that, at the moment, is doing clinical trials for a new partial onset adjunct epilepsy drug.

    I’m working with them on articles and also in-patient info to spread the word and explain what’s involved.

    It’s all really exciting stuff. The easiest way to reach them (If these are the same people you’re talking about) is http://www.teamepilepsy.org/

    In fact, I have a conference call today with one of the nurses…

    I’m thrilled you noticed!

    Like

    Comment by Phylis Feiner Johnson — February 3, 2011 @ 2:17 PM

  4. Phylis,

    I’ll say it again. You are 1 amazing Lady. I applaud All your Efforts. I know someday, somewhere, Thousands of others’ who Have Epilepsy will do so, too. You may feel like you are just 1 voice in a crowd, (For now) but, you Are making yourself be Heard. So, you ain’t famous. You are Still a Champion! In my eyes, anyway. 🙂

    I don’t know nothing about Apps, programs, etc. But, if it helps reach the General Public, that’s what counts. 🙂

    One Day at a Time. One Person at a Time. One Event at a Time. It All adds up!

    Love Candi

    Like

    Comment by candi — February 4, 2011 @ 10:48 AM

    • Hi Candi,
      I agree with everything you said about my friend Phylis. She has been an incredible inspiration to me and so many others. Like the title of this post, I came out of the ‘closet’ 15 years ago but still lived in the darkness and ignorance of my own condition. Back in the day,I used be content with people thinking my PC’s were something else or that I was just weird. Not Anymore! Since my surgery, I really became ‘involved’ with educating myself, and now, with Phylis’s help I’m out to educate whoever I can. having good Dr’s is a great help also, My family Dr, who I’ve been educating just asked me to speak at the local hospital. If anyone told me this 5 years ago, I’d tell them they were outta their mind!

      Like

      Comment by Charlie — February 5, 2011 @ 3:46 AM

  5. Hi Charlie,

    I got a guy in Epland that had surgery 8 yrs ago & feels the same. 🙂 Me, I had woke up to the seriousness of Ep, but, I remained holed up in my Sister’s (Ep,too) home. Her darling Hubby watched over the both of us. I ignored the EFA fliers 40 yrs ago. I figured: What could they do for me that DRS & family couldn’t already do? So, I too lived in ‘darkness & ignorance’ for too many yrs. Then I needed Info about an Epilepsy Drug recall & I joined WebMD/Epland 18 yrs ago. 🙂 The ppl in Epland showed me the way. 🙂 I try to ‘Pay It Forward’. My ‘voice’ is mainly on the internet, 1 day at a time. It’s the best I can do. And I’m content w/ that. 🙂

    I was visiting another site and read a comment/article from Phylis. I loved the way she wrote. And we have been Friends since I sent her a message saying so. 🙂 She visits me & I enjoy visiting her & her ‘family’, here. 🙂 She has an unusual site/support group. But, ‘family’ is felt. That’s how I feel. 🙂

    My family DR refused to learn more about Types of Seizures. Said he knew more than the Internet. Well, I don’t think so! He ain’t talked to the PPL who have been there done that! 🙂 And who Do their ‘homework’! Shoot, I’m Still learning something new all the time. Whether it’s a ‘shared story’ or my own Research for an answer. Searching for 1 answer, finding numerous other answers. 🙂

    Congrats on your ‘speaking engagement’. I know you will Be a Great Voice. And to be heard Publicly, well, that in my book is the ‘cream’.
    I’m Proud to Know You! 🙂

    Love Candi

    Like

    Comment by candi — February 5, 2011 @ 12:05 PM

  6. Because of the title of this post, I have a quote from Orrin Devinsky the founder of FACES I want to share with you all. It’s a fund raising quote, but I thought it worth sharing.
    “Life makes us complacent. Things that should be unacceptable become routine, and once routine they disappear into the background hum of daily life.
    There are many patient’s whose seizures are uncontrolled despite great effort on the part of the person,doctor,family and health care team.
    FACES does not forget. We are focused on making things better.
    Let your family and friends know how Epilepsy has affected your life or the lives of people you love. And use that message to help us in our fight. The help can be small- $5 or $25 or $100…. but when magnified by the size of our community, it makes a big difference”
    Now is not the time to become complacent and accept the unacceptable.
    Make A Difference.”

    We all can make a difference no matter who we donate to or share our stories with. Never give up!

    Like

    Comment by Charlie — February 6, 2011 @ 2:03 PM

  7. Wow, what a wonderful quote. And what a doc! You saw what he said up top in this post when he was interviewed by Newsweek for the article “In the Grip of the Unknown”

    http://www.newsweek.com/2009/04/10/in-the-grip-of-the-unknown.html

    This guy is an amazing spokesman for us. If only there were others like him…

    Like

    Comment by Phylis Feiner Johnson — February 6, 2011 @ 10:31 PM

  8. Hi Phylis & friends,

    SAD! We ALL know John Travolta’s son died. Was there any verification to Epilepsy being involved? The reason I ask is I noted a News article about the ‘New’ Jeff Travolta Memorial Fund. To support a Variety of Children Medical Needs. But, Epilepsy was Not mentioned. 😦 I was really hoping that John would ‘come out of the closet’ & become a Spokesperson.

    Or Did I miss/misinterpret something?

    Love Candi

    Like

    Comment by candi — February 7, 2011 @ 12:37 PM

  9. You’re right! They said a seizure was SUSPECTED as A cause! Sigh.

    Like

    Comment by Phylis Feiner Johnson — February 7, 2011 @ 1:19 PM

  10. Out of curiosity, I did an Update Search. This site had Info I wanted. It does Not confirm he had Epilepsy. It was noted that his Uncle believed he had Autism, which can involve seizures. Lawyers claim Head Trauma as Death. A video interview w/ his ‘Nanny’ 🙂 I didn’t watch it though. Strange how news seemed to drop it after 2009. You could do a Search to read about the Memorial. 🙂 If interested.

    Love Candi

    http://blog.zapit.com/pop2it/2009/01/john-travolta-1.html

    Like

    Comment by candi — February 7, 2011 @ 3:19 PM

  11. Hi Candi, love your photos. Thank you!! 🙂

    John Travota has a website about epilepsy. I cannot think of the name of it off hand. He has come out of the closet. When he came out, it was on WebMD as well.

    I heard that his son died of epilepsy. Sometimes it is hard for a father to put down the right words when his son dies.

    Like

    Comment by ruth brown — February 16, 2011 @ 3:00 AM

  12. The John Travolta website does exist but the only topic he talks about is helping Haiti. There is no message or reference to epilepsy. (Very disappointing!) http://www.travolta.com/site/

    There is still controversy about whether Jett Travolta died of autism, seizures, or an isolated event.

    More hush-hush about epilepsy. 😦

    Like

    Comment by Phylis Feiner Johnson — February 16, 2011 @ 4:33 PM

  13. Hi All,
    I’ve been poking around Epilepsytalk’s search box (great way to find things) and have been reminded about a bunch of good info. I’m trying to study-up for a new Epilepsy support group that is about to take off. This whole story is a good reminder to speak out always, but especially during November (National Epilepsy month.
    Blessings

    Like

    Comment by Charlie — October 8, 2011 @ 2:20 AM

  14. Hi there, was wondering what people do when they feel a seizure coming on to control it. I have focal seizures in my arm and i first have numbness, pins and needle feelings in my fingers, then i get a thumping then my hand and arm starts wanting to flail. Would laying down help? Sitting up in the chair, being perfectly still help? I try to hold my hand/arm still and i found standing up is not really a good idea. I’m new to seizures since i had brain surgery to remove a baseball size tumor. If any one has any suggestions i’d love to hear it.

    Thanks
    Zolt

    Like

    Comment by Zolt — November 11, 2011 @ 9:25 PM

  15. Right after i left this message i found the link here for stopping seizures. Figures. 🙂 Well if anyone one has any comments i’d still be glad to hear.

    Cheers,
    Zolt

    Like

    Comment by Zolt — November 11, 2011 @ 9:33 PM

  16. Do you know what your triggers are?

    Common Epilepsy Triggers
    https://epilepsytalk.com/2010/03/02/common-epilepsy-triggers/

    Weird epilepsy triggers…
    https://epilepsytalk.com/2011/09/19/weird-epilepsy-triggers%e2%80%a6/

    Zolt, there are 167 articles here. (And a LOUSY search engine!)

    But if you have a question, try the (crummy) search engine or else just stick it in somewhere. I’ll answer. I promise! 🙂

    BTW, deep breathing (if I can catch myself before I start to choke) and visualization are what work for me.

    Like

    Comment by Phylis Feiner Johnson — November 11, 2011 @ 10:41 PM

  17. hey how are yall I have had epilepsy (grand mal szs) scince i was 9 yrs old and i am know 26 still have about 3 a month growing up my family always taught me i am no diffrent from anyone else and i can do anything as long as i do it safely. so I always made sure all my friends and family knew about my szs and how to react to them. they never treated me diffrently. One time when i was 13 i was swiming in a close friends pool and i had a seziure her and her family knew exactly what 2 do because i had told them and they saved my life !! Now i am 26 yrs old married with 3 children my kids are 7 months 4 yrs and 6 yrs and i have taught my children all about epilepsy and to always except people with disabilitys of all kind !! My husband always cooks and always carries the baby outside because i dont know when a szs is comming but with the help of great loving family and friends i am able to have a great life !! well i hope my story have helped some people if u have any questions or need any advice e-mail me anytime mstiffany827@aol.com

    Like

    Comment by Tiffany — November 15, 2011 @ 7:36 AM

    • BRAVO to you, your husband and family. You must be doing something right…and can be an inspiration to us all!

      Like

      Comment by Phylis Feiner Johnson — November 15, 2011 @ 6:18 PM

  18. The lives of our children our in our hands!!! We HAVE to make a difference while we can! I had to educate my son’s teacher and staff on what to do in the event of a seizure. (This includes the school nurse!) We HAVE to give our children a better future than that!!!

    Like

    Comment by Tiata Sissons — December 9, 2011 @ 5:40 AM

  19. I was at a school health fair and a Police Sergeant was there as well as the Fire Chief.

    I asked both of them, individually, if they knew what to do if a person had a seizure.

    They each looked at me shamefully and admitted that they didn’t. Happily, the sergeant took away tons of my materials and said he’d schedule a meeting of his men, explaining epilepsy first aid and handing out the materials. And the fire chief said he’d follow up. (Hmmmmmmm.)

    But, whichever way you look at it, small town, big city, it’s appalling.

    The Epilepsy Foundation does have first aid information and training. (And that’s for first responders, too.) But you have to care enough to ask.

    Here’s a letter I received from the Department of Health and Human Services in response to a letter I wrote:

    https://epilepsytalk.com/2010/11/15/there-is-hope/

    Like

    Comment by Phylis Feiner Johnson — December 9, 2011 @ 2:18 PM

  20. The long awaited Support Group I’ve been talking about thru-out Epilepsytalk takes off tonite 1/9/12.
    Thank you Phylis, for all your encouragement and info.

    Like

    Comment by Charlie — January 9, 2012 @ 8:00 PM

  21. You’ll do great. We’re all routing for you and so very proud of you.. Will you have a moderator?

    Like

    Comment by Phylis Feiner Johnson — January 9, 2012 @ 8:21 PM

    • Yes, for this first meeting anyway. A person from the EFA of Long Island will get things rolling. After that we’ll see which way the group wants to go.

      Like

      Comment by Charlie — January 9, 2012 @ 9:48 PM

  22. What they did in my first meeting was give out a questionnaire of what people were most interested in talking about…

    Example: Moods, depression and meds…Family members and how they are affected (actually some people did come with their family members and some had handicapped children so severe, that epilepsy was part of the problem.) Others wanted to talk about spouses, children and how it affected the children and how it affected their marriage. Other topics were epilepsy and memory…(A BIGGIE)

    Once the questionnaires were tallied (many people didn’t turn them in) they hope to address those interests.

    We start with the issue and then let it roll along from there — with free conversation.

    But meds, side effects and memory were the key issues.

    Like

    Comment by Phylis Feiner Johnson — January 10, 2012 @ 1:09 AM

  23. I spoke at elementary schools regarding seizure disorders. I got information sent to me from Epilepsy Foundation. Teachers and students were interested!

    Like

    Comment by red2robi — March 16, 2017 @ 11:52 AM

    • There’s a wealth of information out there. If only people would use it.

      Bravo for you, Red! (Wish there were more like you.)

      Like

      Comment by Phylis Feiner Johnson — March 16, 2017 @ 4:13 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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