Epilepsy Talk

A Neurologist Talks About His Own Epilepsy…

June 29, 2019
12 Comments

In this eye-opening article from the New York Times, a neurologist talks about his own journey with epilepsy: his perceptions, other people’s reactions (not good) and how he decided to become a neurologist.

A wonderful account of the doctor as patient and “must” reading for anyone who has epilepsy…


Dating Disasters and Epilepsy

May 7, 2019
14 Comments

When I was a teen I fell down, walked into walls, bumped into virtually everything in my path, and almost drowned in the shower.

So, you can imagine what a disaster dating was.

Of course, in my infinite wisdom, I would never tell my dates that I had epilepsy. 

My parents wouldn’t even utter the word, so rather than become a pariah, I kept my mouth shut.

Bad idea…


The Isolation of Epilepsy

April 4, 2019
29 Comments

You’re reluctant to go out.  Because having a seizure can be so unpredictable and embarrassing.

You think: “What if I have a seizure?  What will people do?  What will they think of me?”

Those and many other self doubting questions run through your mind.


A Neurologist Talks About His Own Epilepsy…

February 3, 2019
19 Comments

In this eye-opening article from the New York Times, a neurologist talks about his own journey with epilepsy: his perceptions, other people’s reactions (not good) and how he decided to become a neurologist.


What Most Offends YOU About How People Treat Epilepsy?

September 1, 2018
66 Comments

I call epilepsy the “stealth disease,” because most people don’t actually witness a seizure. Which results in an abundance of ignorance…misinformation..and to be frank, discrimination and slurs.


The Stigma of Epilepsy…

January 14, 2018
34 Comments

The stigma is ancient and it still remains today.

Laws in the United States and Great Britain that prohibited epileptic people to marry were just repealed in the late 1980s and early 1990s.

Until the late 1970s, legislations in the United States also prevented epileptic people from entering public buildings such as restaurants, shopping centers, and theaters. [US Department of Health]

Although these laws are no longer in effect, the underlying social divisions that they have created in the past thirty years are still present today.


Epilepsy in Twitter Times

June 4, 2012
10 Comments

Twitter is not our friend.

And the misconceptions and stigma of epilepsy live on.

A revealing study published in Epilepsy & Behavior provides evidence that the perception of epilepsy is not faring well in social media. Kate McNeil and colleagues from Dalhousie University in Canada analyzed data collected from Twitter to provide a snapshot of how epilepsy is portrayed within the twitter community…


Epilepsy Lags in Research and Funding…Even as Stigma Abates

November 7, 2010
10 Comments

From http://www.boston.com, November 6, 2010

“While advances have been made in Parkinson’s and Alzheimer’s diseases, research into another neurological disease, epilepsy, has proceeded more slowly. And funding lags well behind.”


Epilepsy Hall of Fame

September 13, 2009
22 Comments

Since the dawn of time, epilepsy has affected millions of people — from beggars to kings. It’s one of the oldest conditions and also one of the most misunderstood, although legions of accomplished people have shared the stigma.


    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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