Prevalence of Epilepsy - so why public ignorance?

[Rae1889]

Yeah,
I have wendy fighting right now, becuase they threathened to take away her kids if they let them stay in the same room. there reason being becuase if nick has a TC it could be damaging to Savana to watch

 

[Zoofemme]

Another thing I have experienced is that most people think all you have to do is take a pill and it goes away..."poof"...no more seizures. I can't count the number of times I've heard "I know someone who has E and they haven't had a seizure in 5-10-20+ years".

 

[occb]

Yeah,
I have wendy fighting right now, becuase they threathened to take away her kids if they let them stay in the same room. there reason being becuase if nick has a TC it could be damaging to Savana to watch

Oh for pete's sake! Kids are way more resilient than we give them credit for. If they're properly educated they will get used to it.

In the meantime parents who really screw their offspring up get to keep them, because there's nothing diagnostically wrong with them. That's yet another display of discrimination.

 

[Rae1889]

Yup occb, yup.

Zoofemme, agreed. My parents and employer and friends all thought at first that If I just take a pill it won't happen again. Or I'll grow out of it. Etc etc etc. And I have to tell some people several times that its not always the case. In fact its rarely the case.

 

[Endless]

To back up a bit to one of the previous posts... Neil Young has epilepsy? That explains the look he has on his face some of the time. I recognize that deer-in-headlights kind of look, followed by that kinda vacant stare. I say that with lots of love. I'm a serious Neil Young fan. :adore:

Not allowing a child with epilepsy in daycare, when they routinely accomodate more serious disabilities? That sounds terribly wrong to me. Is there a governing board or government body to whom she can educate + complain?

Well, as far as the famous goes, I think we need a Julia Roberts or a George Clooney or a Ron Howard - someone everybody really loves and that people equate to being fairly "normal", to come forward with an epilepsy diagnosis. Someone that people say, "he/she looks normal like me - hey THAT COULD BE ME." Someone who is famous and has done well, to show that we are still capable people and can contribute something, for the most part. (It's just a matter of getting the seizures reduced and stable and figuring out what that something is, given the current situation) And if that person made a movie around some of the lesser known types of siezures, how powerful could that be?

Anybody know any movie stars who might have a reason behind that vacant look? (I know, there are plenty with that vacant look with absolutely no good reason!) I guess what we REALLY need is a powerful director or producer with a relationship to epilepsy. They'd be the one to make the movie.

Now, to find a good screenwriter. onder:

The power of virtual networking. Some day someone will read this post and say, "hey, I DO know someone, and what an interesting project that would be....."

 

[Cint]

From epilepsy.com:

Modern Actors with Epilepsy

Modern actors with epilepsy include Richard Burton, Michael Wilding, Margaux Hemingway and Danny Glover.

Contemporary Celebrities with Epilepsy

This is just a sampling of the many, many famous people whose epilepsy has been recorded by historians. But what about our contemporaries - the gifted celebrities of today who have epilepsy? Unfortunately, we don't know who they are. That's because even today, in an era when epileptic seizures are known to be common neurological events and not supernatural ones, the misconceptions and stigma attached to epilepsy remains. Today, celebrities with epilepsy remain "in the closet," concerned that going public with their epilepsy will result in negative treatment and harm their employment opportunities. This is a shame, because people living with epilepsy- people who are neither geniuses nor celebrities- deserve to have role models to inspire them, and leaders to raise public awareness and understanding of their disorder.

Thankfully, we have the historical record of so many extraordinarily accomplished people with epilepsy to inspire the discouraged and enlighten the world.

Adapted with permission from Epilepsy Toronto

And like I posted earlier, John Travolta's son had epilepsy, did he want it public knowledge?

We all need to be our own advocates. I am the one in my family with epilepsy, and have been the one to educate others. When my two children were in elementary school, I was the one in the family who went to the school to tell other children and teachers about seizures, what to do and not to do so my children would not feel like "freaks" when their mother would go into a TC in public, which happened frequently when they were growing up.

 

[Endless]

Standing ovation for Cint!!!! Well done! :clap: