Sharon Stone has/had "brain seizure disorder"

[travel bug]

During an interview with Steven Colbert, Stone talked about having had a brain hemorrhage, and her recovery from the various long and short term after-effects. She wasn't clear as to wether or not she still has seizures, she says, "I got what's called a brain seizure disorder."

At first I wanted to yell at her through the tv screen and say,"You have epilepsy, there's nothing to be ashamed of!" But, for one thing, she went through a lot with the hemorrhage. And also, I remembered how I was hesitant to use the E word at first: not because I was ashamed or even afraid, but because I had read about all the difficulties many of you go through. My seizures are caused by a brain tumor; I know why I have them and when the tumor's not there, I have pretty good seizure control. Considering all of the stuff many of you endure, I didn't feel I had the right to claim I have epilepsy. But, though I haven't had a seizure since my last brain tumor resection surgery--knock on wood--there's always a chance I'll have another. I still take Keppra. Yay! My tumor will most likely come back and, as before, make itself known through a seizure. Yeah, I have epilepsy.

Maybe Sharon Stone was told she had a "brain seizure disorder" by her doctor and doesn't know the difference. Maybe she's afraid of the "epilepsy" label though she's never seemed afraid of what others think. Maybe, like me at first, she doesn't think she has the right to apply the word to herself. Whatever, her story raises awareness, at least a bit.

 

[marika853]

Yes, admitting that you have E is a big step for many. I should say a huge one! We all have to do what is best for ourselves and live our lives the way we feel we can.
She was brave to even share her story with others.
Hope everyone had a Happy New Year.
M

 

[Nakamova]

I think it's okay for her to use the term "seizure disorder" -- not because having "epilepsy" is shameful, but because as a descriptor or diagnosis both terms are equally accurate and can be used interchangeably (by doctors and patients alike). Some folks prefer "seizure disorder" if only because "epilepsy" comes loaded with thousands of years of stigma, misunderstanding and fear.

In a perfect world everyone would become educated as to what E truly means, but if "seizure disorder" helps with the demystification process, then that's not a bad thing.

 

[Belinda5000]

I've never been ashamed to admit that I have epilepsy.I just prefer seizure disorder.

 

[AlohaBird]

Also I think the term "epilepsy" tends to be associated with seizures of unknown origin. It sounded like in the interview that she was describing her case as an isolated incident (a brain hemorrhage) that then caused her all kinds of neurological issues requiring rehab, etc. "But I'm all better now". Hopefully she is.

 

[travel bug]

When I first started participating on epilepsy boards, it was when I still thought I didn't have the right to say I had E. I soon noticed, though, that people seemed put off by the term "seizure disorder". I didn't find CWE until later so maybe it was just the sites I was on. But I could see their point: the more people embrace the word epilepsy and use it to describe what they have, the less stigma (maybe) there will be attached to the word.
But, yes, AlohaBird, that had been my understanding at first - that epilepsy applied to those whose seizures were of unknown origin. Later it seemed that many were of the passionate view that it was epilepsy no matter what.
I think it's up to the individual what they want to call it. It would be nice if a high profile celeb embraced the E word just for epilepsy awareness sake, but I certainly understand why they may not want to without thinking badly of them.

 

[valeriedl]

I think it's okay for her to use the term "seizure disorder" -- not because having "epilepsy" is shameful, but because as a descriptor or diagnosis both terms are equally accurate and can be used interchangeably (by doctors and patients alike). Some folks prefer "seizure disorder" if only because "epilepsy" comes loaded with thousands of years of stigma, misunderstanding and fear.

In a perfect world everyone would become educated as to what E truly means, but if "seizure disorder" helps with the demystification process, then that's not a bad thing.

I agree with this. People need to be more educated about what 'epilepsy' is.

Before I had epilepsy I even though it meant having seizures where you fall down and start shaking like crazy. Now I know that that's not what 'epilepsy' is and there are other types of seizures.

Even when I talk to people and tell them I have epilepsy and the type of seizures, usually only partials, they are so surprised to know there are seizures like that not just the ones you shake during.

People don't realize there are other things that come along with epilepsy, not just having seizures. You can loose your memory, hearing, feeling in parts of your body, have to re-learn how to do things and many of the other things that she said.

Sharon Stone might not want to have people picture her shaking like crazy if it's only partials she has and that's why she uses the term 'seizure disorder'.

My friends thought this too but now they know. I've had seizures while I've been on the phone with my friend a few times and she can tell it's a seizure that I'm having. I might just stop talking or begin 'baby talking' slurring my words or just saying random words that don't make sense. She gets scared to death, not because I'm having a seizure but because she's not there to make sure I'm ok. She'll stay on the phone with me and have her husband call my husband to come and check on me. This is great!

I just wish when she was asked "How long does it take to get right" she would have said something like it can't be cured instead of saying "A long time".

 

[daviscy60]

Can't always blame person for not understanding there situation. I have been in the same shoes. Had my first seizure when I was 19. I was alone. Picked myself up from the floor. I wasn't sure what had happened. Did not tell anyone because I wasn't sure. Happened a month or so later and again not sure and alone. I lost conscious had aura but did not know what it was. Finally in my sleep one night had a TC. My husband at the time took me to ER. They just sent me to neuro. She ran EEG and CT scan. Put me on meds. Since this time I have seen 4 neuro's & a 2 PCPs all of which state "seizure disorder". I even had people say so you have E??? Not until 30 years later when started having some trouble recurring again that a DR at where I work wrote "Epilepsy"... Going back to see neuro I had seen before I asked and started doing research myself. I am to this day not really convinced of my situation. Especially after reading others problems on here since 2013. In July 2013 was switched from Dilantin to Keppra and have not had anymore seizures. Is it because of the Keppra (which I hate) or could the Dilantin I was taking caused an issue with calcium magnesium levels. Or maybe even the fact that I am female and was going thru menopause. Questions I have tried to have answered only just to here from DRs med seems to be working so just keep taking it. Seems most people that have E take multiple meds and still have seizures occasionally. Or they know what causes them or triggers them. Only thing in past that I did realize is I could miss my meds and no problem unless it was that time of month. So tried to ask neuro if that could be the cause and was told no. Then I read in med dictionary that yes it can. Always thought after I got older and went thru change it would all stop. So u haven't had any problems since July 2013. So I still am not comfortable saying I have E

 

[Cint]

Also I think the term "epilepsy" tends to be associated with seizures of unknown origin.

Well, I guess that describes me, then. My seizures started out of the blue, no tumor, no brain injury, no meningitis, encephalitis, etc. That is why I prefer the word "Epilepsy". It is what it is. And NOTHING has stopped them for me.

 

[Cint]

I agree with this. People need to be more educated about what 'epilepsy' is.

Here is what the International League Against Epilepsy says E is:

New Definition for Epilepsy
Tuesday, April 15, 2014
Seizures and epilepsy are not the same. An epileptic seizure is a transient occurrence of signs and/or symptoms due to abnormal excessive or synchronous neuronal activity in the brain. Epilepsy is a disease characterized by an enduring predisposition to generate epileptic seizures and by the neurobiological, cognitive, psychological, and social consequences of this condition. Translation: a seizure is an event and epilepsy is the disease involving recurrent unprovoked seizures.

People don't realize there are other things that come along with epilepsy, not just having seizures. You can loose your memory, hearing, feeling in parts of your body, have to re-learn how to do things and many of the other things that she said.

Yes, you can loose your mind, momentarily, too. And speech. Many times when I've had CPs, I'm unable to speak for quite a while because I have a damaged hippocampus and that area of the brain controls speech. But I can understand what is being said to me. I just can't answer for a while after the seizure.

I just wish when she was asked "How long does it take to get right" she would have said something like it can't be cured instead of saying "A long time".

:agree:

 

[AlohaBird]

Why should she give up and say, "it can't be cured"? Perhaps in her case it can be.

She had a brain injury. That's like breaking a leg skiing. It needs a lot of rehab work to get better but it doesn't have to be hopeless. Maybe she will never have another seizure again and not need meds. We don't know those details.

Not everyone who has seizures at one time in their life is doomed to a lifetime of seizures and pills. Every case is different.

 

[acshuman]

Coming Out

Saying anything about E seems to be a BIG point of hesitation when it comes to talking positively about E on TV! I have seen so many instances where characters use some type of negative statement about E as a way to make a joke. Until we get it across to these writers that we are NOT going to stand by and let them use our condition as fodder for their stupid jokes, it is going to continue!
It also seems to be very hard for most people in the entertainment field to even mention the word 'EPILEPSY'. It is just like they have the same kind of fear that people had centuries ago when it came to mentioning people w/leprosy, and treating them as outcasts.
Until WE change that way of thinking it is going to continue! WE have to take the initiative ourselves and make people realize that E is no worse than many other 'acceptable' chronic problems!

ACsHuman:twocents:

 

[Cint]

Until WE change that way of thinking it is going to continue! WE have to take the initiative ourselves and make people realize that E is no worse than many other 'acceptable' chronic problems!

WE HAVE! You are singing to the choir! I've been saying this as long as I've had E. My son grew up with a bad case of asthma and I would tell my kids that "mom's E is a medical condition, just like his asthma."

 

[acshuman]

Getting the Message Out

Cint,
It is great that you have done that!
It seems as though we need to take a more widespread action if we are going to educate the public as a whole.
Yes, it is great when a person does this on their own, but doing that only reaches a limited number of people. To reach the public as a whole, we need to get a more widespread type of education and advocacy in motion!
I have seen how much of a difference having a celebrity speaking about E can make. Coach Jerry Kill(who has E) was the head football coach at the University of Minnesota. When he made the decision to advocate for EFMN(Epilepsy Foundation of Minnesota), it was as if the entire state and beyond had their eyes opened about E! He immediately was a hit with the young people. These are the best people to work with when it comes to telling people how they CAN accept people w/E! The young people at Camp Oz each year literally looked at him as their hero. He was willing to talk to each kid privately.
There were many articles written about him having E, in the newspapers(Twin Cities), but we saw how more people backed Coach Kill than backed the writers who callied for him to quit because he was embarrassing the state.
We have seen knowledge about E grow exponentially, in Minnesota,.
since he started being an advocate for EFMN! I believe this happened because many people had always figured that a person w/E could NEVER do what he did, so they wanted to see how he could do it. They found out that people w/E are just as capable as anyone else when it came to doing things, when they put the effort forward to succeed
I think getting more celebrities on board could be very important when trying to reach people!
Camp Oz is a summer camp that EFMN sponsors each summer for kids w/E or who are living with someone who has E(9-19yo I believe). It is amazing to see the faces of these kids, both when they arrive for the first time, and on the day of departure. I have seen kids who were crying because they didn't want to get out of the car upon arrival, cry because they had to leave all of their NEW friends on the day of departure! IT IS BEAUTIFUL! They are meeting other people w/E for the first time, and realizing that they are NOT ALONE!

ACsHuman:twocents: