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Old 01-07-2009, 01:29 PM
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Hi I am a mother and aunt and sister of people who have an epilepsy of some type.Since the news of John Travolta's son surfaced my world has become a little less secure.I know that at any given time anything can happen but the reality of a young fellow dying from a seizure disorder is very upsetting to me.My daughter has had epilepsy since she was 9 months old ,my nephew was diagnosed at 4 and my sister has had it since she was 6 months old. I am thinking that it is inherited by some gene but we're not sure which one I think CN1A. Not that it will make a difference to them now but just the fact that there are people looking into this kind of research really makes me feel better.I just wanted to vent and introduce myself to the forum.
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Old 01-07-2009, 02:03 PM
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Hi smutta! Welcome to CWE. As you'll soon find out, this is a very friendly group of people. I agree, the news of Jett Travolta's death was a bit unsettling. However, for those of us with seizures, we know it's a possibility. The thing to remember is, I can also go outside and get hit by a car. We can't let fear dictate who we are or who we will become. As the saying goes, "The tragedy of life is not that ends so soon, but that we wait so long to begin it. " From the info you give, it sounds like the epilepsy is indeed genetic. And, although there's not much you can do about that now, your daughter should keep that in mind should she ever choose to have kids. Like you, I hope that someday, we will have more and better research into the causes as well as more treatments and even possibly a cure. In the meantime, it's best to 'live juicy". So don't be too afraid.
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Old 01-07-2009, 06:18 PM
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Hi Smutta,

This is a great group here people are great.
What happened to Jett Travolta was terrible and it can happen to anyone who has seizure's.
My grandmother had 12 kids her seizures stopped when she had her first one.
I have a cousin who's father has epilepsy no relation.
My cousin had 2 kids and her youngest her son had epilepsy but he grew out of it.
His sister hasn't had any kids that have developed epilepsy.

My seizures aren't controlled never have been and I refuse sit at home wait for my next one.I've had seizure's over 40 years.
I'll get out go places wear a helmet when my seizures are really bad.
I refuse to isolate myself , I have a life.
Belinda

Last edited by Belinda5000; 01-07-2009 at 06:20 PM.
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Old 01-07-2009, 08:32 PM
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Hi smutta, welcome to the forum.

It's a shame that there isn't more awareness of SUDEP. Life is precious and should be treasured.
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 01-07-2009, 08:55 PM
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Welcome, you have found a great place to come and speak out about your concerns. I know I have been shaken about Jett's death too. I was diagnosed last year. One of my best friend's brother had seizures and had seizure in shower and died several years ago. So I know of the possiblity, but Jett's death brings it in your face.
Education is the best weapon, but when it comes down to it, we have to accept there is a greater possbilty of death is there for all of us. My faith helps me greatly with that.
jen
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Old 01-08-2009, 12:13 AM
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Aloha Smutta- E is an equal opportunist. I have no family history and had my first seizure at age 37. (I'm 29 now for those of you checking my math). My kids have nothing...just me in my little family- I am also the only lefty. The Jett Travolta death does bring it front and center but like Robin says we have to educate one at a time and sometimes, ok, most-times it starts with ourselves learning and pushing for answers. Death will come to us all, as they say, everyone wants to go to heaven...just maybe not today. Make yourself at home here...the water is fine!
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Old 01-09-2009, 09:41 AM
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Smile Thanks so much!!!


You all have made me feel so much better I intellectually know all that you have said but the fear in me allows me to go to the darker side of E.Getting better day by day!!
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