Epilepsy Talk

Twitter is not our friend.

November 8, 2022
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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.


Top Seizure Apps For Smartphones… 

October 26, 2022
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Smart phone apps for epilepsy have been studied with the results published in the International Journal of Epilepsy

Led by Dr. Lakshmi Narasimhan Ranganathan from the Institute of Neurology, Madras Medical College (Madras, India), researchers surveyed the mobile applications available for the everyday care of epilepsy patients.

Those apps include seizure diaries as well as medication trackers with reminders to take the next pill.

Apps are available to answer any question patients with epilepsy might have and to remind doctors about drug interactions to watch out for.

Most of them are free of charge.


What was your first seizure like?

October 22, 2022
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I can remember being in the shower, washing my very long hair.

It was one of those old-fashioned showers with a heavy plate-glass door and a stainless steel handle that you had to turn to get in and get out.

There were 4 water jets…three coming from the side wall…and a shower head in the ceiling.

All of a sudden, it felt like my blood was rushing out of my toes.

As all of my energy drained out of me, I thought: “I’m going to drown.”


How Creative Are YOU?

September 24, 2022
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I was born a writer. Just like I was born with brown eyes. In 5th grade when we were assigned to write a poem with an illustration, everyone wrote about the spring, flowers, stars, the city, the country. I wrote about racism. My illustration was a black silhouette pasted against white paper. My teacher promptly sent me home with a note for my parents, accusing me of plagiarism.


Sleep apnea — it’s not just what you think it is

September 11, 2022
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It’s not just snoring. It’s much more dangerous than that. Even deadly.

The estimated prevalence in North America is approximately 15 to 30 percent in males and 10 to 15 percent in females, But, as much as 40 percent of epilepsy patients suffer with undiagnosed sleep apnea. Especially those with refractory epilepsy.


Epilepsy — a dirty little secret?

August 15, 2022
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To be included — or excluded?

To be accepted — or rejected?

To be understood — or misunderstood?


Seizure-free…a hope or a promise?

August 13, 2022
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Is it a reality…a hope…or a promise?

Have you been there once for a visit? And then come back, to the land of falling down, shaking, quaking and blackouts.

We all know, the only thing that remains the same is change.

Everything is in a state of flux. Drugs, science, our bodies, our brains.

From that you can choose hopelessness. Or hope.


Where’s the funding? Epilepsy as an orphan.

August 2, 2022
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Here are the facts, unhappy though they may be…

Epilepsy is the 4th most common neurological problem – only migraine, stroke, and Alzheimer’s disease occurs more frequently.

Its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson’s disease combined.

As many people die from epilepsy as from breast cancer.

There are 150,000 new cases of epilepsy diagnosed each year, and a total of more than 3.4 million Americans are affected by it.

Yet, public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis).


Why won’t you play with me?

July 28, 2022
5 Comments

Once upon a time there was this girl named Ellen.

She had epilepsy and she hated the world.

So the world hated her back.


Stevens-Johnson Syndrome — A Danger For Those On Dilantin Or Lamictal

July 18, 2022
7 Comments

This article is not for those with a weak stomach. Because Stevens-Johnson Syndrome is an ugly and sometimes deadly disease.

But if you are on Dilantin or Lamictal, I urge you to read this information.


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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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