Epilepsy Foundation

Step Up and Speak Out


Step Up and Speak Out

For those of us who are tired of the stigma- as well as the lack of general knowledge- attached to Epilepsy, and desire to make a difference. A place to exchange ideas, share fears, ask questions and celebrate our successes.

Members: 347
Latest Activity: Dec 31, 2014

Discussion Forum

re: Why is Epilepsy freaky?

Started by Don Miller. Last reply by Timothy Davis Jun 20, 2014. 109 Replies

Can anyone tell me why the word Epilepsy freaks people out? It's like we're lepers and they don't want to catch the dread disease.  Epilepsy is not contagious people. Hylephobia means fear of…Continue

Tags: understanding, hylephobia, condition, Epilepsy

FReaks people out

Started by Casssandra B. Bernstein. Last reply by Timothy Davis Jun 20, 2014. 3 Replies

I guess the word causes fear because the actual seizure is wild and somewhat unusual. Depending on the type of seizure. A petite mall can be unsettling and a grand mall  down right frightening to…Continue


Started by Sydnee Alyster. Last reply by Timothy Davis Jun 20, 2014. 4 Replies

I think the misunderstanding comes from movies. I remember watching a movie about Caesar, who had seizures, which portrayed him as nearly going mad during an episode. we share a condition with many…Continue

New medicine

Started by Taylor Rae Wade. Last reply by Timothy Davis Jun 20, 2014. 2 Replies

Hello fellow Epileptics :)This is my first time being apart of a group like this so it's all new to me. It's nice being able to talk to people that understand what i'm going through. I just started…Continue

Comment Wall


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Comment by Pam Sullens on June 30, 2014 at 4:43pm

I understand -I don't need a therapist and I am sorry there is not a current cure-there is a lot of hope out there for people who really need it. Brain surgery is an option and was for me-it was the only alternative since I had gone so many decades with intractable seizures-I did not think I had brain damage all those years-I thought I was just like anyone else-I was not-I have seen the damage to my brain-and I know that all the years before I had my surgery that I could have done something-I did not-guess that was my stupid choice-I really don't want anyone else to make the same mistakes-if they have a chance to do it-than I am encourging those who can-I'm just trying to provide hope-to let people know there is hope-there is a cure-there are options-I had a neuroligst tell me the same thing back in 2006=-I remember telling him that if I did not have any seizures that I would be dead-it was that much a part of me-little did I know that every time I had a seizure that yes my brain was being more damaged-(I've seen the films) -anyway-there are viable treatment options out there even if surgury is not an option for some people.

I do understnad-the frustration-and sometimes the anger that you may be going through regarding a disorder that really takes control away from those who have it-in every aspect-I am sorry that you think I require a vacation. To be honest-even if I wanted to I could not-I have not had a job-since 2009*-because I lost it due to a seizure-I ended up in the river-with my family-God did save us-even if I was irresponsbile with my dealing with my disorder- that was a moment that I gave up my DL-and thus-did not work-It's been hard and taken a toll on my family -I am looking for a job now-since I am able to drive-So I don't really need a vacation I do need a job. ( :

I am sorry that I led you to believe I'm in "love with the condition" love is a choice-I did not choose to have seizures-I can tell you-I am grateful . It's been proven that if my CO2 had been cut off any more during my Mom's difficult delivery that I would not be able to walk-talk or see. My mom almost died giving birth to me-I am sorry that I've bother you-As I said-it's not my intention to offend anyone-I will not be speaking to you again if that is what you want-if not I will be happy to answer any concern-

If it makes you feel better to just vent and get angry at me that is really okay. I am sorry to hear that your seizure disorder was inherited.Sometimes that does not give us many options does it? Either way-seizure foci can be removed-and someone who does have seizures whether inherited or not-can have the foci removed-it is brain damage-that does not mean us as people are any better or worse-Seizures and the reason we have them-are caused my brain tisses that are misfiring. The misfiring can be caused by gentitcs or can be aquired-they can be taken out usally as a last resort like I did. So-yes I had brain damage-and no I am not disturbed-

You are not making it easier for anyone else on this site-I am sure you know that there are a LOT of people with intractable seizures who are shamed due to lack of awareness by unknowing people. Please don't make it harder for those on this fourm who may be trying to understand and to cope with this disorder. Again-I am sorry if I've upset you in anyway-I was never in love with anything-The only person I am in love with is Jesus Christ-He is the reason I can type these words-He is the one who saved me-I am praying that someday the Lord will remain with you the way He has with me. I don't know if you are a Believer-if you have the Lord in your life-If you were to have a seizure today-a really bad one-that took your life-can you tell me without doubting that you would not end up burning in  hell?

Comment by Pam Sullens on June 30, 2014 at 11:33am

Timothy There is a cure but unfortunatly not for all whcih therein lies a lot of fr ustraion for those who can see it. The research is exploding now an d they ar e working very hard to get a cure for those with those who have damage that is harder to reach in the brain- In your last - was the title of the song alluding to not taking the AED's or not going to take the fact the research about the disorder is slow due to lack of awareness? Thanks=Pam

Comment by Tammi Zavardino on April 21, 2014 at 6:37pm

Hope all had a Happy Easter I certainly did and since getting back on the right medicine have been seizure free also. We are finally getting some better weather and things are looking up I wish you all the same.

Comment by RANDY SHERMAN on April 20, 2014 at 12:59am


Everyone have a seizure free weekend.

Comment by Michael J. Cerven on April 17, 2014 at 1:26pm
I have to quit posting with this stupid touch-screen tablet: It posted my comment before I was done writing it, which made me sound incoherent, so I deleted that & posted this explanation, instead. Maybe later I'll try again on the 'real' computer.
Comment by Tammi Zavardino on April 17, 2014 at 10:34am

To all there isn't one of us who hasn't broken one of God's commandments and because of this that is why the world is the way it is. But you also have to remember God does forgive us for our sins if we ask for his forgiveness but it also says go and sin no more but Satan is very powerful and we are weak. When you are suffering you tend to want to hurt someone else because you are hurting and don't understand why you are having to go through some things others don't have to and I say this because I have been there and know how that feels but when you turn your life around and give it to God you will find you are much stronger and can deal with things much better. This is not a bible school or church but it is important to remember that God is a factor in our lives and without him things would be much worse. I hope you all have a wonderful day.

Comment by Tammi Zavardino on April 17, 2014 at 10:18am

Hello everyone I am sorry I have been away for awhile but my computer has been down and couldn't get anyone to straighten it out. I am happy to say I have been seizure free but a mix up in medicines caused some problems as usual so had to get that fixed and now am back in shape again. I hope you are all doing well and have missed talking with you.

Comment by Robert Keane on April 17, 2014 at 8:03am
Not allowed to post. How narrow minded. I didn't realise you had to be believer in fairy tales to comment. Very disappointing, I thought I could speak MY mind, I did not mean to offend.
Comment by Michael J. Cerven on April 17, 2014 at 1:23am

Robert, I'll respond to your post, in the spirit of the advice given by the apostle Peter centuries ago to "Sanctify the Christ as Lord in your hearts, always ready to make a defense before everyone who demands of you a reason for the hope you have, but doing so with a mild temper and deep respect."—1 Peter 3:15


You made no such demand, but your statement begs the question, why we and so many others like us believe as we do. I don't fear truth; I proclaim it.


You accused Christianity and its God, but long before Christ appeared, God was known by others. Over ten centuries before Christ came to Earth, a king wrote that "The heavens are declaring the glory of God; the skies above proclaim the work of his hands."—Psalm 19:1 Centuries later, the apostle Paul echoed that thought when he wrote, "[God's] invisible qualities are clearly seen from the world's creation onward, because they are perceived by the things made. . ."—Rom. 1:20


Creation not only implies, but outrightly declares the existence of a creator. Science confirms this, in that matter and energy can neither be created nor destroyed, only changed in their form to a different variety of one or the other. Something cannot come from nothing.  The prophet Isaiah addresses the question: "Lift up your eyes to heaven and see. Who has created these things? It is the One who brings out their army by number; he calls them all by name. Because of his vast dynamic energy and his awe-inspiring power, not one of them is missing."—Is. 40:26


Even if without faith in the bible, creation itself speaks of a creator by its intricacies and elements that show the work of a grand designer. From the water cycle to our own makeup, we see what is not the product of random chance happenings, but that of design and creative effort. Science speaks of a 'big bang', with order coming from chaos, in the face of known laws of physics. Evolution requires more faith in unseen events taking place than any religion known on this planet: Too many chance happenings taking place in just the right ways at the right places and times are required for life to exist as it does or has in the past.


Beyond what creation states about its creator, we have what He says of himself in scripture recorded centuries ago and preserved through the years. In these writings is knowledge not the product of ordinary men acting on their own and trying to compose nothing more than an interesting story.


Too many people now believe or have believed in earlier times in God and the truth of his writings to reasonably state that all of these have been deceived by the cleverness of human authors long dead. People are not often willing to die for things they do not truly believe, nor for what are mere stories. Over the centuries, many have seen that faith tested to the death—often one involving burning at the stake or cruel butchery. One need not look as far back as the times of Wycliffe, Zwingli, and others for examples; such faith has been shown as recently as in the concentration camps of Nazi Germany, where Christians were treated brutally and murdered, and in other places since.


To believe that all these are or were deceived is to say that not even one of these—or anyone else—had or has the intelligence over the centuries to discern the deception and expose it as error. Instead, the truth about God and his kingdom is being proclaimed in over 240 lands and in most languages.


Finally, if the existence of God were merely a way to keep order, it clearly isn't working: Disorder confronts us daily on the news as God is disregarded and men do as they please. "But let God be found true…"—Rom. 3:4


Comment by Pam Sullens on April 16, 2014 at 10:35am


I have a quick question for you, and I assuming that you've heard of the Bible and the Ten Commandments.-Have you ever told a lie in your life-just one? - Have you ever stolen anything-even a small thing-like a pen or something?-Well-to God , those are sins-Sin is sin to God-He does not make the difference between- "big sins" and "little sins" - God is perfect-and God keeps His word. He will not change.

God is not a "story". and His word-the Bible does contain stories of His truth and true accounts. You are also correct that most people including myself do what I want to do-at least I used to. Romans 3:23 Everyone has sinned, and we all fall short of God's glorious standard. (the 10 commandments) (if I and you break or have broken just 1 of them-even stealing a pencil-we will suffer His wrath. 

God is not responsible for us breaking those commandments-Satan is!-You are listening to him now by denying God-and by denying HIs holiness! God is speaking to you-otherwise you would not be so defensive Robert-

Do you know something? God hears your thoughts- and He knows ever time we've broken on of His "little  sins". Satan wants to not to hear these words-because satan knows that you are searching Robert. He wants to be separated from God-forever. satan also knows that you have to make just 1 choice-that will not be separated from God-that choice is this: Believe in your heart- and receive in your mind-that you are a sinner (that you've broken at least one of God's commandments) -if you Robert believe in your heart-that Jesus Christ is the son of God-and if you admit to Him that you have broken his commandments -and that you proably will break even more of them(-which we all have including me) -God is Holy- Romans 3:24 says He knows that we've all broken and will break those laws- Romans 3:24 says that God with the kindness none of deserve-declares that we are righteous.

If you confess with your mouth that Jesus is Lord  and believe in your heart you will be saved. -But- He will pour His anger and His wrath on those who live for themselves. (believe that His word is "nonsense?)-and who refuse to believe the truth and instead live lives of wickedness. There will be trouble and calamity who everyone who keeps doing what is evil (denying our sins (even the "little" ones). But there will be glory and honor and peace from God to all who does good (accept that we've sinned). God does not show favoritism.

If you were to die today from a seizure perhaps; can you say without any doubt-that you would be with the Lord? If you don't say this and don't believe this-I can say without a doubt that you would no, and I would be with Him.

God is responsible for all the is good and beautiful-we are made in His image Robert-Choose this day who you will serve-Satan wants you to die-God is begging to you that you will live. It's up to you. Being "good" is not enough to God.




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