Navigating Epilepsy: The Road Ahead

The Stigma of epilepsy: Education about epilepsy is stigma’s Kryptonite

iStock_000008077722XSmall-kryptonite-164x164What is stigma??               According to, it’s “a mark of disgrace; a stain or reproach, as on one’s reputation.”

Kryptonite: the only substance that can weaken Superman’s unbeatable strength.


We just need to look through history books to see how epilepsy has been mischaracterized (stigmatized) since what seems like forever.  Stigma has some very real effects: the person who is “marked” in this way, may end up being looked down on, locked up, considered intellectually deficient, contagious, evil, or dangerous by their community.  To make matters worse, someone who is seen like this by their own community may end up “self-stigmatizing” (e.g. being convinced that because of your epilepsy, you are in fact unable to be independent, to work, to parent, to live life fully, that you are somehow flawed).

The society’s prejudices about epilepsy can turn into real restrictions of civil rights (i.e. voting, parenting, living independently), as well as, negative media portrayals suggesting a connection between violence and the epilepsy.  Recent news stories coming out of England report how persons with epilepsy “fear leaving their home” because of the community’s ignorance about epilepsy; they are sometimes laughed at, shunned, and even abused.

All of the above are powerful reasons for why we need to make this change.  Spreading the seeds of knowledge to anyone who will hear us through the Internet and public education is the key.

As part of our effort to Stomp out Epilepsy Stigma, from September through November of this year, we are holding our Epilepsy: Knowledge is Power campaign.  Our campaign offers a total of 12 free educational conferences on epilepsy for loved ones and persons with epilepsy throughout NY, NJ and CT.  All are welcome.


And on an on-going basis, we keep running several Facebook pages (Epilepsy Life Links and Epilepsia en Latino America) offering epilepsy education in English and Spanish as well as a quarterly e-newsletter.  We still have a long way to go, but if we keep this up, these seeds of knowledge will sprout and will become Kryptonite to centuries of ignorance.

3 Responses to “The Stigma of epilepsy: Education about epilepsy is stigma’s Kryptonite”

  1. Wow! Powerful article! This will be shared over and over. The information you provide is similar to what I am providing in my blog. With this information people living with seizures and those caring for them can begin to find peace and hope in their daily lives. Thank you for being positive and proactive in giving your reader the information needed. I have yet to post an article on stigma and would consider it an honor to post this one. Consider it and we’ll work out the details.

    Peace&Power –

    Terrific Tonya Heathco
    National Seizure Disorders Foundation

    • Terrific Tonya, It would be an honor for you to repost this article. The more the word gets out, all the better! Thanks so much for your kind words.

  2. Nice post. I was checking constantly this blog and I’m inspired! Very helpful information specifically the closing part 🙂 I care for such information much. I used to be looking for this certain information for a long time. Thank you and good luck.

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