Epilepsy Foundation

Step Up and Speak Out

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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: May 15

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

misconception

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

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Comment by Tammi Zavardino on May 15, 2015 at 12:56am

It isn't easy to make others understand what we go through because they have never had taken away what we have but there is no need to feel like we need to hide away and I know sometimes it feels so darn depressing because we want to do more and areant allowed to but the key that opens the door is educating others so they do understand were not freaks or something to be afraid of and we want to live a life just as normally as others so do so as best as you can.

Comment by bradley on May 13, 2015 at 4:41pm

Do you know what I have found that the biggest part of hopeless in our life's is when having Epilepsy or any other type of illness is not being able to drive and a person can have all the money in the world but if she or he can't leave the house and has to look out the windows all day what good is it. I think to my self and I lost one eighth of my brain and I'm smarter then so many people and have been asked to do and volunteering for all kinds of things and I have to say no I can't drive and always held back from doing things that I know how to do and can do and could make money and I think just donate it, but also wonder about these other people that did not loose their minds and think like me and say every day I want to live better then mom & dad and have our family live richer then them & just use their head on their shoulders even know we can't do much and have a handy cape sticker and have a medical alert bracelet but wake up and use the brain we
 do have and learn something new each day instead of complaining how bad things are and then can teach other people what we learned!

Comment by Sam Inglese on May 13, 2015 at 12:19pm

To be able to "Speak Out" we first need to "Catch The Eyes" of those who are not aware, understand, or care. I will do this by bringing them into our circle by making our conditions as close to THEIR lives as possible. For my documentary I will film the most exciting, educational, catching and personal stories of the most memorable seizures in public. Different types of seizures in different parts of the country. Different reactions and results by the public being forced to see it and take part? To run? To stare... I need your favorite attack with your ability to be on camera and your help in finding the funds to get the equipment and crew necessary to film at a level accepted by film festivals and television around the world. And to travel across the U.S. recording the best stories. Contact me with all your questions, referrals and 1 most memorable attack and promise to sign the release for me to use it in my documentary. ambimind65@yahoo.com. I have begun to distribute my screenplay. A Romantic Comedy where Jack and Anna discover the other has epilepsy.

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

HAPPY EASTER EVERYONE

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.
--Mike
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.

 

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