Epilepsy Talk

Truth is Stranger than Fiction | July 4, 2019

I call epilepsy a “stealth disease”, because it’s difficult to imagine how so few people know about a “silent” condition that affects so many.

For example, few people know:

* Epilepsy affects over 3.4 million Americans of all ages – more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined.

* In America, Epilepsy is as common as Breast Cancer, and takes as many lives.

* It’s the third most common neurological disorder after Alzheimer’s and stroke.

*Almost 500 new cases of epilepsy are diagnosed every day in the United States.

* Epilepsy affects 50,000,000 people worldwide.

* One in 100 people will develop epilepsy.

* One in 10 people will suffer a seizure in their lifetime.

* This year another 200,000 people in the U.S. will be diagnosed with epilepsy.

* Children and seniors are at higher risk.

* 30% of those diagnosed are children.

* Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

* There are 40+ different types of seizures.

* For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

* In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

* In over 30% of patients, seizures cannot be controlled with treatment.

* Uncontrolled seizures may lead to brain damage and death.

* Up to 50,000 Americans die each year from seizures and related causes.

* The mortality rate among people with epilepsy is two to three times higher than the general population.

* Risk of sudden death among those with epilepsy is twenty-four times greater.

* Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.

* The Federal Government spends much less on epilepsy research compared to other diseases, which affect fewer people.

* Each year the National Institute of Health (NIH) spends $30 billion of medical research, but just ½ of 1% is spent on epilepsy.

* St Valentine is the patron saint of people with epilepsy!

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  1. USA, USA, Americans. There’s a whole world outside the USA that seems to get forgotten on the internet!

    Liked by 1 person

    Comment by Douglas Lee-Murray — July 4, 2019 @ 11:37 AM

    • Epilepsy accounts for a significant proportion of the world’s disease burden, affecting around 50 million people worldwide.

      The estimated proportion of the general population with active epilepsy (i.e. continuing seizures or with the need for treatment) at a given time is between 4 and 10 per 1,000 people.

      Globally, an estimated five million people are diagnosed with epilepsy each year.

      In high-income countries, there are estimated to be 49 per 100,000 people diagnosed with epilepsy each year.

      In low- and middle-income countries, this figure can be more than two times higher (139 per 100,000).

      This is likely due to the increased risk of endemic conditions such as malaria or neurocysticercosis; the higher incidence of road traffic injuries; birth-related injuries; and variations in medical infrastructure, the availability of preventive health programmes and accessible care.

      Close to 80% of people with epilepsy live in low-and middle-income countries.



      Comment by Phylis Feiner Johnson — July 4, 2019 @ 1:31 PM

  2. V good. Also people with epilepsy much more likely to suffer from depression…. but that perhaps is a whole other blog

    Liked by 1 person

    Comment by sharonrossblog — July 4, 2019 @ 11:54 AM

  3. Hi, I like the blog, but it’s 1 in 26 people will develop epilepsy, not 1 in 100. That’s always a big shocker for people who don’t know much about epilepsy.

    Liked by 1 person

    Comment by Alison Zetterquist — July 4, 2019 @ 12:46 PM

    • I think 1 in 26 people will develop a “seizure disorder”. And even though WE associate that with epilepsy, it can be a seizure disorder of a different kind, from many other causes.

      At least that’s how I understood it, but I could very well be wrong.

      Epilepsy can be caused by brain damage from prenatal or perinatal causes (e.g. a loss of oxygen or trauma during birth, low birth weight);
      congenital abnormalities or genetic conditions with associated brain malformations;
      a severe head injury;
      a stroke that restricts the amount of oxygen to the brain;
      an infection of the brain such as meningitis, encephalitis or neurocysticercosis,
      certain genetic syndromes; and
      a brain tumour.



      Comment by Phylis Feiner Johnson — July 4, 2019 @ 1:40 PM

  4. In this particular case, most likely USA got better data collection system & public information mechanism than many other nations, who would NOT even know or acknowledge what makes for “Epilepsy”, neither have the resources to fight the neurological disorder.
    Now, imagine how much the rest of the world is suffering from this mysterious disease, many parts of the world consider it to be a “curse or possessed by demons”?

    Liked by 1 person

    Comment by BahreNegash Eritrea — July 4, 2019 @ 12:49 PM

    • Professor Newton and Professor Hector Garcia, both Wellcome Trust Senior Research Fellows, conducted a comprehensive review of academic articles about epilepsy in developing countries in order to piece together a picture of the burden of the disease in poorer parts of the world.

      They conclude that the high number of people with epilepsy in these regions is likely caused by the higher incidence of risk factors, such as head trauma, complications during childbirth, and parasite infections such as pork tapeworm (neurocysticercosis), and river blindness (onchocerciasis).

      The study also reveals the enormity of the treatment gap in poorer nations, with over 60% of people living with epilepsy in low- and lower-middle-income countries not accessing appropriate care. This is partly due to poor adherence to prescribed treatment but there remain huge barriers to accessing care, particularly in rural areas. The stigma associated with the disorder and cultural beliefs around causation is identified as a major problem, along with distance from a health-care facility and inadequate skilled manpower.

      The epilepsy burden could be easily reduced by addressing some of the risk factors, say the authors. They highlight several ways in which epilepsy care could be improved at low cost, including by engaging traditional healers who for many people are the only point of care for epilepsy. Given the lack of expertise in management of epilepsy in poorer areas, they suggest that neurologists and psychiatrists should combine to set up services for the management of epilepsy in these regions.

      “Sadly, adequate facilities for diagnosis, treatment and on-going management of epilepsy are virtually non-existent in many of the world’s poorest regions. Many people with epilepsy or their families do not even know that they have a disorder that can be controlled with biomedical treatment, so it is vitally important that awareness is raised and medical care improved in these regions,” added Professor Newton.



      Comment by Phylis Feiner Johnson — July 4, 2019 @ 2:13 PM

      • An observation living in a developed, very westernised but former British Colony, so predominantly Caucasian with an indigenous population and in recent years large multi-cultural growth.

        In several decades involved in the epilepsy scene I maybe encountered only 2 or 3 people EVER involved in support groups or anything to do with it in general who have NOT been Caucasian. In other words, there still very much is a cultural taboo here around epilepsy. In certain groups it’s still not something to be talked about, it’s shameful. In one particular group there’s religion added to the mix (demonic possesion). These same groups are happy to talk about having any other medical condition (except mental illness of course) but epilepsy, can’t even talk about it in the family, yet alone with others who have it. It’s so awful, we’re talking 2nd, 3rd generation people here too, the cultural ingraining is so strong, and we know how isolating epilepsy can be. At least these days there is the internet for them.

        Liked by 1 person

        Comment by Katie — July 4, 2019 @ 10:17 PM

      • Katie, over 500,000 people in the UK have epilepsy. That’s about one in every 100 people.

        Here are some interesting statics about attitudes:

        •The average UK attitude was positive but differed by stigma domains.
        •Negative stereotypes were associated with the least stigma.
        •Risk and safety concerns were associated with the most stigma.
        •Knowledge of epilepsy explained the most variation in attitude and stigma.



        Comment by Phylis Feiner Johnson — July 5, 2019 @ 8:55 AM

  5. Doesn’t the EFA claim over 65 MILLION or more has Epilepsy ? I know in 2000 there were to have been 50 MILLION according to the NIH, who 1 of the doctors I had there told me that, but that didn’t mean she or he was right.

    Liked by 1 person

    Comment by C D — July 4, 2019 @ 4:39 PM

  6. Fascinating Phylis. For those interested in a more world wide perspective the recent World Health Organization report might be of interest . See:


    ( I hope that is the correct link, I had a problem copying it. If it doesn’t work just google WHO epilepsy report.)

    Michael H

    Liked by 1 person

    Comment by Michael H — July 4, 2019 @ 6:50 PM

  7. Thanks Michael, that’s a great link. And the World Health Organization (WHO) is a great source.

    All you have to do is scroll down to read all the details.

    Thanks again!


    Comment by Phylis Feiner Johnson — July 4, 2019 @ 9:11 PM

  8. May I print this? This is something everyone’s needs to know. Thank you for gathering it for us.

    Liked by 1 person

    Comment by leica2015 — July 5, 2019 @ 9:04 AM

  9. In addition, at least for me (and perhaps for others) is the issue of sexism which I have encountered over and over again in the medical profession. The devaluing, ignoring and oftentimes trivializing of my concerns about epilepsy, side-effects of meds, proper diagnosis, etc, etc. . It existed years ago when I was a youth and has not decreased,

    Liked by 1 person

    Comment by skolly9 — July 5, 2019 @ 6:30 PM

  10. Not only sexism but also age discrimination.

    I’m sure both those who are “young” and those who are “old” must experience this and feel the effects.


    Comment by Phylis Feiner Johnson — July 5, 2019 @ 6:43 PM

  11. Phylis,

    Amazing, yet sobering facts.

    Your writing style shows immense knowledge and is tastefully articulate. Have you authored a book on this subject?

    Liked by 1 person

    Comment by Tom Waltz — July 6, 2019 @ 5:00 AM

  12. Thanks for the compliment, Tom.

    No, I haven’t authored a book, but I’m to be in a book about Epilepsy Advocates by the famous neurologist, Steven Schacter.

    It’s being published by Oxford University Press and should be out this fall or winter.


    Comment by Phylis Feiner Johnson — July 6, 2019 @ 9:03 AM

    • Phylis,
      Considering your personal experience with Epilepsy & deep understanding & commitment to EpilepsyTalk, helping many of us understand the ordeals & remedies for Epilepsy & your passionate love to write, you are a good candidate to publish a book, more than writers who have never experienced the struggle with Epilepsy.
      Sharing your experience beyond EpilepsyTalk, your book could make a whole lot of difference in the Epilepsy world.
      Go for it, Phylis! Write a book for the whole world to benefit from.

      Liked by 1 person

      Comment by BahreNegash Eritrea — July 7, 2019 @ 6:01 PM

      • My thoughts too, only put more eloquently by Gerrie. I imagine you could put the first truly comprehensive practical guide on epilepsy.

        Liked by 1 person

        Comment by Tom Waltz — July 8, 2019 @ 12:24 AM

  13. Phylis,, The attachment I sent I have maybe sent to you in the past, but I am not sure that you did get it. You need to read it all again which I have more than once, knowing that every cellulose seems to be in all drugs, foods & even bottled water that I never drink much of. We have good well water here & I plan to keep it that way, as I have no desire to move. All to say that every cellulose can affect the thyroid. In the next 10 days I am to have my thyroid blood work done, so IF you can, Could you send to me the EPILEPSY 1st article you posted on the THYROID health relating to seizure conditions ? i also get my VIMPAT blood levels done at the same time. Thanks,,, James,, / C D

    Liked by 1 person

    Comment by jcdavis@hardynet.com — July 6, 2019 @ 9:27 AM

  14. Your Thyroid…What Everyone with Epilepsy Should Know…



    Comment by Phylis Feiner Johnson — July 6, 2019 @ 9:37 AM

  15. Tom,
    Thanks for your compliment.
    And I agree with you, Phylis’s lifetime personal experience with epilepsy & very passionate commitment to fight the neurological disorder & deep understanding of the struggle to overcome the medical hardships, social misconceptions, barriers, stigma & very professional writing skills for ordinary people to understand the terminology of the medical language would make Phylis qualified to write a book about Epilepsy, more than those who’re learning the struggle against Epilepsy from second hand.
    And coming from personal experience, the book would be more helpful in understanding Epilepsy.
    Let’s hope, Phylis is ready to carry on the crusade against Epilepsy far beyond EpilepsyTalk, to the benefits of a bigger world.

    Liked by 1 person

    Comment by BahreNegash Eritrea — July 8, 2019 @ 6:27 AM

  16. Yes Phylis, I do hope you write a book! Gerrie is right about your knowledge, commitment and experience with epilepsy. You would be giving the (non-e) world an incredible gift of knowledge. Quite frankly, stress from stigma, misconceptions, etc, has had a profound effect on helping exacerbate my seizures, and I doubt I’m alone.

    Liked by 1 person

    Comment by skolly9 — July 8, 2019 @ 3:07 PM

  17. Good news!

    Dr. Schacter’s Advocacy book is going into production soon:

    “We have heard from Oxford University Press, that the book is now going through the various stages of copy-editing and that we will have the galley proofs for review very early in September.

    Once received, we will send your edited story along with relevant instructions, via email for your review. There will be a fast deadline and we will need to have your approved copy back within a week of receipt. Any delay will affect the planned timing of the book release, which is hopefully November/December.

    If you anticipate that you will not be available to review your story during the first weeks of September, please let us know.

    We hope you are all enjoying the summer!

    Very best wishes,

    Linda, Steve & Cecile”

    I know it’s not writing a book, but it IS being published in a very prestigious book.

    I’m psyched.

    P.S. Will tell you more about the book, once it is published.


    Comment by Phylis Feiner Johnson — July 9, 2019 @ 1:42 PM

    • Congratulations Phylis, Thank you for sharing the good news, it’s fantastic to know your lifetime precious experience, deep understanding & valuable knowledge of the struggle against Epilepsy is importantly contributing factor to the new book being published by Oxford Press to the benefits of a bigger world in desperate need of information about Epilepsy.
      Thanks for your tireless & selfless commitment & hardwork to speak for the voiceless victims of Epilepsy, you made this world a better place to live more than you will ever come to know, for a whole lot people who has been taken for hostages by epileptic seizures & the struggle against Epilepsy.
      Again, congratulations for your successful struggle to make a difference in this world, your contributions to the new book will certainly benefit a whole lot of people more than you will ever come to know.

      Liked by 1 person

      Comment by BahreNegash Eritrea — July 9, 2019 @ 5:40 PM

      • I can’t deny I’m excited. I’m sure I’ll be in plenty of good company with Dr. Schacter as the organizer.

        The question is, will he use the pre-fab template he sent OR will he allow the other submission I made:

        Return from the Edge – by Phylis Feiner Johnson – http://www.epilepsytalk.com

        I almost died.
        For a while I couldn’t even read.
        My brain needed rebooting.
        They told me my heart had stopped and I was lucky to be alive.

        It took me several months for my cognitive abilities to return.
        Months during which I had plenty of time to think.

        Previously, I had a high paying job in advertising, which I hated.
        I loved my clients and they loved me.
        But I wanted to help people.
        It was time to give back.
        And my near-death experience gave me the perfect opportunity.
        (Once I found the keyboard!)

        I went to all sorts of non-profit organizations. No one wanted me.
        Until I found the Epilepsy Foundation of Eastern PA who welcomed me with open arms.
        And the monthly support groups were like manna to the soul.

        Nevertheless, it was not enough for me.
        I wanted to write about epilepsy, a subject dear to my heart.
        I sought to put epilepsy out in the open and talk about it.
        After decades of epilepsy, that’s what I knew best.
        Along with the fear, discrimination and ignorance that went with it.

        My parents wouldn’t even say the “E” word.
        Told by my step-father surgeon that my brain waves were just uneven. As I smashed into walls and fell up and down the stairs.
        But there was nothing wrong with me.
        I couldn’t bear it. And knew that I was not alone.

        I truly believe, in their heart of hearts, that people want to help.
        They are kind and caring. Not ignorant and selfish fools.
        It was just a matter of showing them how.
        I wanted to start a website. Problem was, I didn’t have a clue how.
        Passion was my motivation.
        Helping others was the key.
        If we can’t help each other, who can?

        And so, after much research, gnashing of teeth and a few false starts, the website EpilepsyTalk was born.

        The purpose was to educate and inform – those who had epilepsy, plus their near and dear ones.
        After being treated like a pariah, and discriminated by even my own parents, I wanted a haven.
        Where people come and learn, ask questions, even vent.
        The kind, caring, compassionate, thirsty, hungry, aching members became my life.
        The reason I got up in the morning.

        Now, http://www.epilepsytalk.com is an award-winning website.
        With a searchable database of more than 400 articles.
        Answering every conceivable question people might have about epilepsy.
        Plus, thousands of discussions about how they cope with their conditions.

        People who have wanted to commit suicide have been talked “off the ledge”.
        Others have helped others realize how to cope and even prosper.

        My passion has had its rewards. Literally and figuratively.
        Recently, my husband and I were made “King and Queen” at the annual Epilepsy Foundation of PA’s annual fund-raising gala.

        We are very proud.
        But I am most proud of my EpilepsyTalk family and their contributions to our society.


        Comment by Phylis Feiner Johnson — July 9, 2019 @ 5:48 PM

      • Again Phylis, you have come a long way from being helpless victim of Epilepsy into inspiring heroiness, championing the cause of millions of helpless & voiceless victims of Epilepsy, desperately struggling & trying to control their seizures & live their lives as normal ordinary everyday people, free of medical hardships, social isolation & discrimination from the very communities they help build & hold dear, love & respect.
        I’m pleased & happy to know that, the Epilepsy Foundation of PA has recognized & honored your tireless crusade & hardwork to fight against Epilepsy & social misconceptions & discrimination, leading to your important contribution to the new book in the process of being published by Oxford Press.
        I’m definitely sure, your lifetime story & successful struggle & determined crusade against Epilepsy will come to inspire many victims of Epilepsy, their families & the rest of the world, a whole lot more than they had ever known before, just like I’ve learned the mystery behind epilepsy from you.
        Best Wishes!


        Liked by 1 person

        Comment by BahreNegash Eritrea — July 10, 2019 @ 12:22 AM

  18. Actually, this is better than being published by The Epilepsy Foundation.

    It’s being compiled by the famous neurologist Steven Schacter.

    He is chief academic officer and program leader of neurotechnology at the Consortia for Improving Medicine with Innovation & Technology (CIMIT) and a professor of neurology at Harvard Medical School (HMS).

    And yes, Dr. Schachter is past president of the American Epilepsy Society. He is also past chair of the Professional Advisory Board of the Epilepsy Foundation and serves on their Board of Directors.

    Impressive credentials! 🙂


    Comment by Phylis Feiner Johnson — July 10, 2019 @ 9:24 AM

  19. Exactly the point, the futured book coming & reaching far & beyond the shores of Epilepsy society is certainly enlightening informative to the world void & negligent of the neurological disorder, breaking down the social misconceptions of Epilepsy in a bigger world.
    Therefore, providing your valuable experience to the world hungry of information & education about Epilepsy is certainly rewarding beneficial to all of us who are struggling with Epileptic seizures & to the rest of the world still learning the struggles against Epilepsy.

    Liked by 1 person

    Comment by BahreNegash Eritrea — July 11, 2019 @ 3:37 PM

  20. Since it’s called “The Inspirational Journeys of Epilepsy Advocates Book” I hope it WILL inspire others.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — July 11, 2019 @ 3:40 PM

  21. The title of the book is already intriguing enough to inspire many more people to come out of the shadows of social isolation & denial, like I tried very hard to do, hide my seizures from my own family, friends, coworkers & general society, even when I was carried out to hospitals in ambulances.
    Thank to EpilepsyTalk, I learned & managed to overcome the shame, humiliation & deep fear of “neurological disorder” & survived Epilepsy for 20 years to make it this far.
    I can wait to have a copy of the new book, displaying for the whole world to see that “how I beat the odds”.
    Keep it up Lady, you’ve no idea how much good you’re doing to this world.


    Liked by 1 person

    Comment by BahreNegash Eritrea — July 11, 2019 @ 4:27 PM

  22. Hey, I can’t wait to see the book either! Once it goes on sale (probably on Amazon), I’ll let you know.


    Comment by Phylis Feiner Johnson — July 11, 2019 @ 4:31 PM

  23. This was told to me from 2 other members. I would like to join the group.

    Liked by 1 person

    Comment by Dona Giordano — February 6, 2021 @ 8:12 PM

    • Hi Dona! To join the Epilepsy Talk group and subscribe to the latest articles, simply go to the bottom box of the right column, enter your email address and click on “Follow.”

      As for “The Inspirational Journeys of Epilepsy Advocates Book” you can order that from Amazon, but I warn you, it’s very expensive. (Text book price.)


      Comment by Phylis Feiner Johnson — February 6, 2021 @ 8:58 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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