"Oh No, Not Epilepsy!"...

This marks the first of a series of guest-bloggers I will be inviting to blog about their personal experiences (either as an individual with the condition, a care-giver or a health-care professional) with some rare and not-so-rare conditions. It is just my way of helping spread awareness about various health issues, and the challenges, aspirations and lives of those who live them first-hand.

I hope that by allowing posts such as these, it will help to humanise these conditions/disorders, and help to open a forum of discussion for those living with it, as well as reminding them they are not alone.

Today's blog-post is by
Phylis Feiner Johnson, an epilepsy-advocate and a professional copywriter who has epilepsy herself.

For those who are interested in reading how epilepsy affects the world and its epidemiology, here's a link on the World Health Organisation website.

Phylis Feiner Johnson

Confessions of 42 years of Epilepsy…

By Phylis Feiner Johnson

When I was diagnosed with epilepsy, my parents told me I’d “never amount to anything.” But they were wrong.
I became an advertising copywriter, first on the corporate side, next as a freelancer for 25 years.

Then, two years ago, I almost died from a continuing cascade of seizures. I had a heart attack, went into a coma, then life support, ICU, etc. When I got out of rehab, I couldn’t even find the keyboard…which left me plenty of time to think.

So I decided to ditch my freelance business and become a full-time epilepsy advocate. I started my website: www.epilepsytalk.com and I was up and running!


I can remember my first seizure vividly. Even though it was 42 years ago. It’s seared in my memory forever.…

I was in the shower, washing my hair. It was one of those old fashioned showers with 4 water jets coming out of the side wall and a big dinner plate shower head in the ceiling.

All of a sudden WHOOSH! I felt like all of my blood was running out of my toes. I started falling down and I thought, “I’m going to drown.”

I pushed against the shower door but it was one of those heavy plate glass kind with a circular handle that you had to twist. I threw myself against the shower door but no go. Then I thought: “I’m going to die.”

I pushed and twisted as hard as I could. Then I passed out. When I regained consciousness, my head was on the bathroom floor. All the rest of me was still in the shower. I crawled out and just laid on the floor. I didn’t scream or call out or do anything. I was too terrified.

When I went to visit my father, I walked into a wall and passed out. He decided it was time for some testing…

They did those messy EEG’s and I was annoyed, because I couldn’t get the goop out of my hair. But a week later I had better things to worry about. Because I was in my father’s office when the neurologist called. All I heard my father say was “Oh NO. NOT epilepsy!

That was the first and last time I heard the “E” word.

I went home to my mother’s house where and my step-father -- who was a surgeon -- patiently explained that I just had uneven brain waves. My mother never uttered the word. Dilantin was just a pill to keep me from falling down. And by then, I was having 4 seizures a day.

I continued to pass out, walk into walls and I even broke my nose, but everything was A-OK. I just had uneven brain waves.

You can imagine what a disaster dating was. Of course, 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.

I felt completely alone… Nobody knew how to act around me. My own parents didn’t even know what to do with me.

Little did I realize, I was far from alone. I just had never met anyone else with epilepsy. Never in a thousand years would I have guessed that in America, epilepsy is as common as breast cancer and takes as many lives. And it’s still considered an “orphan” disease, according to NORD (National Organization for Rare Disorders.) Yet, more than 3 million Americans are affected by it -- more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined.

Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

In two-thirds of patients diagnosed with epilepsy, the cause is unknown.

Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.

In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.

The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.

It is estimated that up to 50,000 deaths occur annually in the U.S. from prolonged seizures (where people stop breathing), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.

There’s is a strong association between epilepsy and depression. (That’s not too surprising. You’d be depressed too!)

And here’s the kicker, historically, epilepsy research has always been underfunded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.

Here’s, a good example:

Just a while ago, I heard on the radio that the Juvenile Diabetes Foundation was moving to larger headquarters to house their growing staff. Our branch of the Epilepsy Foundation was cutting staff.

So you can see why we need your help. We need EVERYBODY’S help…to spread information to those uninformed and misinformed …to raise awareness that we’re not all crippled weirdoes. And yes, we need money too. To help fund research…to maintain supportive resources for people with epilepsy…and someday find a cure.

We need friends, we need advocates, we need support, we need you.



Jaganthan said…
This is my first time commenting. My 4 year old son has epilepsy and we are worried about how he will fare in school later. Thank you for helping to promote awarness about epilepsy on your blog.
MLee said…
Hello, I just got your comment on my blog, yet can not email you or I would:) Shoot me a comment with email and I will not post.
Anonymous said…
I have never commented even though I always read but 50 million ppl with epilepsy?
That is crazy. I have never seen anyone have a seizure and you are tellingme 50 million people have epilepsy? That is 3 times the number of people in Malaysia!
Daphne Ling said…
Hi Jaganthan,

It was lovely to hear from you!

With proper support (especially from the parents, doctors and teachers), treatment and education, I think your son will fare just fine.

I know of quite a few number of individuals with epilepsy who adjust very well.

You might want to try support+professional websites such as www.epilepsy.com for easy-to-understand resources and social support.

Good luck!
Daphne Ling said…
HI MLee,

Thanks...I've already sent you a note! Keep up the good work!
Daphne Ling said…
Hi Anon 13:50,

You know, just because you haven't met someone with epilepsy does not mean they're not there. It could just be that people choose not to share. There is still a lot of stigma surrounding the condition, and alot of the stigma is from people who misundertand and misjudge the condition.

People with epilepsy are just as normal as everyone else, just with some different challenges.

This is a note from Phylis Feiner Johnson:-

"Newsweek says: The statistics are stark and sobering— and for the uninitiated (which is to say most of us), startling. Epilepsy in America is as common as breast cancer, and takes as many lives.

A mysterious and widely misunderstood affliction, epilepsy is a disorder in which the brain produces sudden bursts of electrical energy that can interfere with a person's consciousness, movements or sensations. Up to 50,000 Americans die each year from seizures and related causes, including drownings and other accidents; one in 10 people will suffer a seizure in their lifetimes.

By some estimates, the mortality rate for people with epilepsy is two to three times higher—and the risk of sudden death is 24 times greater—than that of the general population. There are 200,000 new cases each year, and a total of more than 3 million Americans are affected by it—more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Between 1 and 3 percent of the population will develop some form of epilepsy before age 75.


P.s.: You have your stats wayyyy wrong. If you're saying that 50 million is more than 1/3 the population of Malaysia, you're saying that Malaysia only has about 16 million people? Sorry, but we have an estimated 28million people, as of 2009. So like your idea of Malaysia is outdated, so are your perceptions about epilepsy.