Prevalence of Epilepsy - so why public ignorance?

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Endless

Endless

Even Keel
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Prevalence of Epilepsy - so why public misconceptions?

I was really surprised by the statistics about the prevalence of epilepsy - about 1 in every 100 people. That means assuming a family size of four (extended family size of 16 or more), one in every 6 people or so has a parent, grandparent, sibling, aunt, uncle, cousin or other relative that has epilepsy. If you add in friends, almost everybody has a connection to epilepsy in some way.

If epilepsy is that common, why is there so much lack of knowledge in the general public? We should be one big understanding world. Sure, cancer is three times more prevalent. But autism numbers are roughly equal to epilepsy, and I think people know more about autism and feel more comfortable with the topic than they do epilepsy.

So why the lack of public knowledge? Why the strange responses from family and friends about the disorder, let alone strangers? Why the lack of policies and understanding in our workplaces? Is our advocacy that far behind other diseases? Or are the preconceptions and stigmas that embedded? Or am I completely off the beam? Maybe people understand more than I think they do, and I've just happened across a difficult batch of folks.

Maybe this belongs in the padded room. But I really am curious what you all think is at the root of all this.

Personally, I think we need a hit movie about a person with epilepsy. It would go a long way. Sort of like "Rain Man" did for autism.
 
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I agree with you. Before I got diagnosed with it, I was familiar with it,but only vaguely. Since I have gotten diagnosed, I had TRIED to educate family and friends. My Mom is the worse about wanting to know. She finally told me when she was young (she is 73), they always thought epilepsy was tied to demon possession and she has always had trouble since with it. I guess I was glad she finally told me....but I was shocked that she cannot let go of that.
I think so many people are just uncomfortable with it and have blocked their mind to learning about it.
I know we have a huge battle on our hands to educate other.
 
I think

that JGB has hit the nail on the head. For years, centuries even, people have tied E to demon possession, witches and more. Knowing that has affected the thinking of many people. Autism on the other hand, has made people.....in a lot of cases, silent if you will, and true, they do sometimes behave strangely, especially the low-functioning autistics. BUT, it wasn't always associated that these "quiet, strange" people would seize, and be "demon-possessed."

Even though it has come to light that many people in the public eye actually have E, the general public still can't wrap their minds around the sight of someone having a seizure of any type.........that demon possession/witch thing still hangs in their subconsciousness. Silly, but true.

Just my :twocents: I'll get off my :soap: now. :bigsmile:
 
Endless, I love your idea of a movie!

Epilepsy is one of the oldest conditions, one of the most misunderstood and one of the most underfunded. NORD still lists it as an "orphan" disease. I call it a "stealth" disease. Because, after all, how often do you actually see someone having a seizure? And those who witness a seizure don't have a clue on what to do.

They're afraid. They've heard all of these awful myths. http://www.coping-with-epilepsy.com/forums/f23/epilepsy-myths-992/

They're uninformed or misinformed http://epilepsytalk.com/2009/09/08/epilepsy-myths-live-on…/ And until we go out there and educate them, they'll remain that way.
 
Many people mistakenly believe that epilepsy is a form of mental illness -- so there's an extra dose of stigma for epilepsy advocates to contend with. (I've done work for groups advocating on behalf of the mentally ill, and their battle for acceptance and understanding is even greater than for those with e). It's not so long ago that people with epilepsy would have been sterilized as "defectives". I think a disorder that messes with the mind, is unpredictable, and can leave the patient unconscious or unable to communicate, is very scary to the average person. And it's "invisible" not only because of the stigma, but because for the most part it is a chronic rather than degenerative or infectious disease. Despite the fact that epilepsy can affect health and quality of life in profound ways, it resides in the limbo reserved for many chronic disorders, and is perceived as not "serious" enough to capture major attention.

Think how much of a big deal it was for Michael J. Fox to talk about his Parkinson's disease. (Another stigmatized disorder emerging into public consciousness). There is enormous sympathy for him (as there should be) because we are visually reminded of how the disease has changed him. It's hard to imagine a celebrity with epilepsy being able to command the same attention, in quite the same way.
 
I think part of the problem, at least on a personal level, is that until such point as I have a seizure I am asymptomatic. No one would know I have any major health issues if I didn't say something or seize. People don't like things they can't see. In many cases people feel ignorant for making stupid choises, such as cramming a spoon down someones throat, in an emergency. Most people I know don't like to be made to feel uneducated.
Its hard to champion a cause when as a general rule we all appear "normal".
So thats my :twocents:
 
Yes, I saw him on the Today show. He did a good job.

I'm hoping for someone who actually HAS it to come forward. Statistics show there should be many in the hollywood community. Who knows who it might be?
 
I don't know, but they're certainly not stepping forward. I know Danny Glover has epilepsy. And Neil Young's daughter has epilepsy...
 
Senior Advisor to President Obama, David Axelrod and his wife, Susan, started CURE- Citizens United for Research in Epilepsy. Their daughter has epilepsy, had brain surgery and has learning disabilities. They have both appeared on "60 Minutes" and other news shows to discuss the issue.
 
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.... and John Travolta's son died from a seizure, didn't he?
 
I agree.
If so many people have it, then why do people ignore it so much.

I dont want this to sound mean in any way, but this is what I have noticed:

People are more willing to look at and help/acknowledge the visible disabilities. It makes people awkward to look at someone who have severe malformations and severe mental disability where it is "noticable". Yet people are more nervous to stand next to someone who has E. My reasoning is that unlike the people who are noticable, our company cannot guess when the seizures will happen and we can suddenly look "disabled" instead of someone immediately recongizing if we are. Its a comfort zone for people I think. You walk outside with someone in a wheel chair with a feeding/breathing tube and "normal" people have to get over the "embarrasment" right away. or at least acknowledge that they will be stared at. With people with E, people who barely know you are walking with you in public are anxious, hoping the whole time you dont embarras THEM if you seize. People are selfish, and as bad as the above sounds. its truer than true. But both types of disabilitys recieve less than standard acceptance.

study
 
Yes --ignorance is rampant!

I was surprised at the level of ignorance our middle school nurse had. Just knew the two types with outdated names petit mal and grand mal.

She did know first aid for seizures and helped to coordinate our health care plan with the staff. She has taken good care of her when a break through happens. But ... really come on now!

Our neuro is right--YOU must be an ambassador for epilepsy, he says----

I love the web site talkaboutit with Greg Grunberg -- he's right,we MUST talk about it. I make a point to whenever I can -- it is part of who my DD is.
 
In my experience, people with visible disabilities generally experience more awkwardness, rudeness, embarassment and general derision and dismissiveness than those with invisible disabilities.

As an example, partner has a cane which he now refuses to use, despite the fact that it helps him walk distances longer than two blocks. Why? Because when he used it, people pointed and laughed, yelled obscenities at him and treated him as if he were mentally impaired. One person even swerved as if to run him down when he was crossing the road. There's nothing like having a visible health problem to bring out the class in people.

The healthy are uncomfortable with the unhealthy. They don't like to be reminded that they could experience chronic health problems themselves. They would rather pretend that everything can be overcome with the right meds, and the right attitude (if I hear the phrase "you have to create a space for the possibility..." one more time, someone's losing a tongue and I'm holding a community book burning). If you're obviously sick AND have a bad attitude NOBODY wants to be near you. Except maybe me. Sometimes.
 
Fear...that's why not as many people know about it. It's not as if we have a physical characteristic that might give us away....so we can "hide" easier. That, and the fact that seizures are usually thought of as happening to people who are mentally defective , on drugs, or possessed, and you can see where the problem lies.
 
occb said:
The healthy are uncomfortable with the unhealthy.
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Agreed. But I still think that when someone knows you have a disability that they cannot see or predict, then they get a little more anxious.

MY friend is trying to move out of a crappy area right now, but is having such a hard time because she cannot find an apartment that will let her and her 2 kids live in. She has a 1 year old girl and a 4 year old boy who is high functioning autistic with seizures. . The rental boards will not allow the children to sleep in the same room due to Nicks disability. They wont let her sleep in the living room or Savana to sleep in her room.

Plus if she did find a place, day cares are denying her because they say that they cannot handle a disabled/special needs child. Yet they deal with children who have life threatening allergies all the time, a child in a wheel chair and those that require medications. But they cant deal with a few absence seizures and maybe a complex partial. pathetic
 
Rae1889 said:
Agreed. But I still think that when someone knows you have a disability that they cannot see or predict, then they get a little more anxious.

MY friend is trying to move out of a crappy area right now, but is having such a hard time because she cannot find an apartment that will let her and her 2 kids live in. She has a 1 year old girl and a 4 year old boy who is high functioning autistic with seizures. . The rental boards will not allow the children to sleep in the same room due to Nicks disability. They wont let her sleep in the living room or Savana to sleep in her room.

Plus if she did find a place, day cares are denying her because they say that they cannot handle a disabled/special needs child. Yet they deal with children who have life threatening allergies all the time, a child in a wheel chair and those that require medications. But they cant deal with a few absence seizures and maybe a complex partial. pathetic
Click to expand...

You have a point -- I think seizures are particularly scary for people, in part because when they happen, they can look frightening, and in part it's beacuse it's like a ghost in the machine that just takes over -- like the person you knew isn't there anymore for a while.
 
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