Epilepsy Talk

Epilepsy Advocacy Letter | November 3, 2015

Dear Friend / Neighbor,

This isn’t a note asking for money. (Although feel free to donate if you want to!)

It’s about epilepsy.  Because even though over 3 million Americans have it (more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined), no one seems to want to talk about it.

[Insert your own story here]

Anyway, this isn’t a pity party. It’s to tell you about epilepsy and what you can do to help a person having a seizure…and maybe even save a life.  Here’s some simple first aid:

1. Turn the person on his side, so he/she doesn’t choke.

2. Put something soft under his/her head.

3. Clear the area of both people and objects.

4. Do not put anything in his/her mouth.

5. And if the seizure lasts for more than three minutes, call 911.

It’s nice for someone to stick around and reassure the person. Give them a hug. Tell them it’s ok. Because, I promise you, it’s very embarrassing to have a seizure in public.

But it didn’t stop Alexander the Great…Aristotle…Alfred the Great…Alfred, Lord Tennyson… Vincent van Gogh…Charles Dickens…Alfred Nobel…Edgar Allen Poe…Gustave Flaubert… Fyodor Dostoevsky…Lewis Carroll…and Bud Abbott, among others.

I’ve enclosed a sheet about epilepsy myths and facts.  Because there’s a chance you  might know someone who has epilepsy. It could be a friend, neighbor, co-worker or loved one. And I think you would help them immeasurably by knowing more about epilepsy.

Thanks for listening…




Phone Number [Optional]

Email Address [Optional]

Epilepsy Myths Live On…

Just when you thought today’s world had become enlightened, there are still a lot of myths and fears about epilepsy — fueled by lack of knowledge and misinformation.

Here are a few examples:

Myth: Epilepsy is contagious.

Fact: Epilepsy can’t be caught from contact with a person who has epilepsy.

Myth: People with epilepsy can’t be employed.

Fact: Many people with epilepsy are successful in all types of professions.

Myth: People with epilepsy are physically limited in what they can do.

Fact: In most cases epilepsy is not a barrier to physical achievement. In some circumstances, when seizures are not being well controlled, persons with epilepsy may be advised to refrain from certain activities such as driving an automobile, working at heights or working with certain machinery.

Myth: Only kids get epilepsy.

Fact: Although epilepsy is more common in children and teens under age 15, epilepsy happens quite often to older adults.  Currently, more than 570,000 adults age 65 and above in the U.S. have the condition.

Myth: Epilepsy is rare and there aren’t many people who have it.

Fact: Epilepsy in America is as common as breast cancer. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy, muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.

Epilepsy can occur as a single condition, or may accompany other conditions affecting the brain, such as cerebral palsy, mental retardation, autism, Alzheimer’s, and traumatic brain injury.

Myth: You should force something into the mouth of someone having a seizure so that they don’t swallow their tongue.

Fact: Never jam something into their mouth. It’s impossible to swallow your tongue and YOU could get the bite of your life!

Myth: Epilepsy is no longer a problem since there are medications to treat it.

Fact: Over 30%  of people have  intractable epilepsy which cannot be successfully treated with medication.

Myth: You can’t die from epilepsy.

Fact: Epilepsy can become a life-threatening medical condition when seizures cannot be stopped. This year an estimated 25,000 to 50,000 will die of seizures and related causes. Patients with epilepsy have a mortality rate two to three times more than that of the general population, and their risk of sudden death is 24 times greater.


  1. Reblogged this on cheerfulbiz.


    Comment by Veronique — November 3, 2015 @ 7:07 PM

  2. wonderful letter ! Thank you as usual! we are amazing people!


    Comment by Veronique — November 3, 2015 @ 7:08 PM

  3. Veronique,

    Now all we have to do is convince the rest of the world! 🙂


    Comment by Phylis Feiner Johnson — November 3, 2015 @ 7:16 PM

  4. I’ve told a lot of people that having this decease is not a joke. Cause I myself have to deal with it and I know what to do even if I’m around others who have it too. I’ve
    even helped someone who did have one that lived not far from where I live.


    Comment by Corina — November 3, 2015 @ 8:05 PM

    • You have the advantage of knowledge. Many people act out of fear and ignorance.

      I’m convinced that in their heart of hearts, people would like to help. But they’re crippled by that same fear and ignorance.

      And if they just had some information and education — of who we are and what epilepsy really is — they would try, in some way, to be helpful, rather than hurtful.

      That’s what awareness is all about.


      Comment by Phylis Feiner Johnson — November 4, 2015 @ 9:07 AM

  5. Reblogged this on catsissie.


    Comment by catsissie — November 3, 2015 @ 9:01 PM

  6. What really makes me the most frustrated ( not my word of choice) is that nobody even acknowledges epilepsy Take epilepsy month. Both! Except for for us, those of us who live with it every day. Don’t get me wrong, I live every moment that is seizure free to the fullest & grateful for it. I just don’t get it. I am not ashamed, & I am open about my disease. But it does not seem that my fellow citizens are. What a pity. I have met the most giving & caring people I have ever known in my life. Their loss. Thank-you all & and I ljulie ove every one of you for it.


    Comment by Julie Faith — July 18, 2016 @ 11:19 AM

  7. I guess the point is that we have to our own advocates.

    Gain strength from each other, educate, inform and take each opportunity we have to show and explain that we’re not lepers, we’re not helpless and actually, we are NOT different because of one affliction.

    And that means for many to “come out of the closet” and let others know.

    Since our case is invisible, it’s more difficult to explain to others. I call epilepsy the “lurking” disease.

    No one can see it, few can explain it and in the wink of an eye you can (surprise) find yourself in a seizure.


    Comment by Phylis Feiner Johnson — July 18, 2016 @ 12:05 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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