Epilepsy Talk

Teen Epilepsy Support Groups

May 7, 2012
13 Comments

In recent years, support groups that cater specifically to teens with epilepsy have emerged, started by hospitals, religious groups, and affiliates of the Epilepsy Foundation. The number of support groups for teens with epilepsy is growing, but it is still small when compared to the many for adults with epilepsy and parents of children with epilepsy…


The “SmartPen” –- PERFECT for Struggling Students!

February 10, 2012
18 Comments

For all those struggling students, now there’s this new, incredible device called the “Smartpen”.

Yup. A pen can be smart.

Here is a pen that could transform the life of a learning disabled child. Or a physically challenged person.

How about a pen that might bring up the grades of a college student who finds it difficult to take notes fast enough to record the main points covered by lecturers?

A Smartpen is a computer in a pen that can capture handwriting at the same time as recording speech. Users can tap on their notes to replay what was recorded. Think of it as a digital “touch” pen…


Increased Birth Defect Risks in Two FDA-Approved Epilepsy Medications

October 20, 2011
2 Comments

Two epilepsy drugs – Lamictal and Keppra – which are currently listed in category C may be dangerous to a fetus and should be listed in category D, according to new data. The difference between the categories is that D shows evidence of risk, but the benefits outweigh the risks…


Epilepsy Brought Alive By Three Amazing Talents

June 30, 2011
8 Comments

Maggie Mendus, Tiffany Webb and Terry Tracy all have one thing in common: Epilepsy and a rare, inspiring talent. Through poetry, fiction and film, they take us on a jorney of what it is like to live through seizures with astounding depth and feeling.

Don’t miss any of these three creative break-throughs.


Tell Your Senators: STOP Cuts in Epilepsy Research and Disability Programs…Take Action NOW!!!

March 2, 2011
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Tell Your Senators: STOP Cuts in Epilepsy Research and Disability Programs!!! Take Action NOW!

The House of Representatives recently passed HR 1, a bill that would provide funding for millions of government programs for the remainder of the current fiscal year. The bill contains cuts to programs that are important to people with epilepsy including: $1 billion in research funding at the National Institutes of Health, of which $5 million will likely come from epilepsy.

The Senate is likely to vote on this same measure in the next week.

Please ask your Senator to vote against HR 1 when it comes to the Senate. Please also spread the word by telling a friend about these cuts, NOW.


MEG — Could It CURE Your epilepsy?

February 18, 2011
2 Comments

Regardless of your age or epilepsy syndrome, all patients of all ages deserve the possibility of living seizure-free. And for those with intractable seizures, surgery is often the answer. But it’s a scary and risky proposition.

But, now there’s new hope when all else fails. A powerful new brain scanning tool which could make all the difference between successful and unsuccessful surgery. Even for those whose surgery has failed before.

Called the MEG (Magnetoencephalography), this powerful scanner acts as a real-time brain mapping and imaging device to determine where the epicenters of seizures are in the brain. It can detect changes in brain waves that occur on the order of milliseconds, as opposed to a second or more with magnetic resonance imaging (MRI). And for a select few patients, those extra milliseconds can mean the difference between life and death.


Clinical Trials. YES or NO?

February 10, 2011
6 Comments

If I was asked to take part in a clinical trial, I’m not sure what I’d say…

First there is the fear factor. Would I be a guinea pig for something dangerous? Would they take away my medicines? Would it hurt me? Would it change something in me?

I asked those very questions to Patient Advocate David Albaugh at Team Epilepsy. http://www.teamepilepsy.org/

Here’s what he had to say…


Your Child Has Just Been Diagnosed With Epilepsy…

January 23, 2011
8 Comments

The diagnosis comes in. It’s epilepsy.

Your heart drops to the bottom of your stomach. You may panic…or cry…or call in the troops for support.

Whether your child is an infant, toddler, grade schooler, adolescent or young adult, how you behave now will make a world of difference to their future.

Here are some resources to help you help your child…


The Sacred Disease. A Movie You Can Not Afford to Miss…

November 28, 2010
4 Comments

The Sacred Disease is a movie you can not afford to miss…

Motivated by lack of funding and awareness for epilepsy, this film covers the full spectrum of what it’s like to live with this neurological condition by following the lives of three individuals. The Sacred Disease displays an intimate portrayal of the complexities and daily difficulties faced by people with epilepsy.


There IS Hope!

November 15, 2010
7 Comments

There IS Hope!

Here is an encouraging letter I received from the Department of Health & Human Services:

Thank you for your personal message regarding the training of law enforcement officers and other public safety personnel who respond to people experiencing epileptic seizures…


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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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