When did you first meet someone else with epilepsy?

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PhylisFeinerJohnson

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I was 28. And we instantly bonded. It's as if we were war buddies -- from down in the trenches. Fighting the same enemy with no allies in sight. We had our own language and our own coping secrets. And we remained friends for life.
 
I have never met anyone that I knew had epilepsy. I assume since 1% of the population has it, I've met someone that has it. But who? I guess I'll never know.
 
First person ever would have to have been Optical_angel. We worked together before I had my first TC.

After diagnosis would have been Chris515.
 
When I was about 10 or 11 years old. My 1st cousin, who is a few years younger than me, was diagnosed with epilepsy at the time. She has only TC seizures and now hers are pretty well under control.

Strange, I didn't start having them until I was 22 years old and I have hard to control CP and secondary TC seizures. :ponder:

And since then I've seen others having seizures, once in Barnes and Noble, and other times when I was at my epileptologist's office and from being involved with the local Epilepsy Foundation.
 
My mom's brother had epilepsy. I knew him all my life. He passed away a few years ago.

My son started having absence seizures last year.
 
I think the first was the epilepsy nurse that I see.
 
A friend of my aunt has Epilepsy and I knew him from when I was young - like probably about 8 or so. There were a couple of girls at school who had Epilepsy also.
 
My Mother in law was diagnosed just a few years before me, I remember thinking I can't believe Tina has epilepsy! then 2 years later I was diagnosed with it. I don't know anyone my own age with it though plus hers is pretty well controlled unlike mine which sometimes makes me a little jealous, now I know that makes me soun like a spoiled brat but I am not jelous of her I am really glad for her I am jealous mine is so the oppisite! does that make sense? because I don'twant to sound like a bad person as i have a lot of love and respect for Tina
 
Good reply Husky I was just thinking the same thing. BTW how is the weather in IN? I grew up there.
 
One of my uncles had E which was the result of a cerebral aneurysm which was inoperable at the time (the sixties). The aneurysm let go and that was the end of it. I do remember seeing him have several grand mals when I was little.
 
p59-

It is cold already here! Woke up to frost this morning, but there is a promise of 70's in the afternoon for the rest of the week. Fingers crossed!!
 
I had a friend in school who had epilepsy when she was younger, but she had grown out of it by the time she was 10ish. I talked to her recently, she's convinced that everyone can "grow out of it", even me lol.

I once saw a girl having a seizure at school, and then i didn't (knowingly) meet anyone else with epilepsy - apart from family members - until i started working with adults with learning disabilities. I got diagnosed just as i was starting this job.

Apart from the girl at the school, i never actually saw anyone have a tonic clonic seizure until about a year after i started my job.
 
Sounds nice still close to 100 here in AZ. We are suppose to be back up in the mid 90's. Miss the country back there but I do not miss the snow!
 
My parents have moved to AZ in retirement to get away from the snow. I would like to follow!! Show me the 100's! It is after all a "dry" heat :roflmao:
 
craziest thing, I first met a group of people with epilepsy a few years ago in the emergancy room.
The hospital was understaffed, and we were all waiting to see a doctor, and everyone there had been picked up for a seizure, this was before i learned you could turn down being picked up by an ambulance.
Since I figure I was going to be there for a bit, I went a head and ordered a few pizza's from the cheap place.
 
other than my own relatives it was when I was in High school and ppl I met through the epilepsy foundation.

I also met about 15 people on another boardabout 12 years ago inwe all met in Atlanta.
 
meet in person? our member 2nd chances (mel). both got on a plane and flew to different parts of the country, first seen each other in person when she walked in the hotel room at midnight. was surreal, but nice.

lol and then, out of our control, the weekend fell apart at astounding speeds (from losing our bank cards to a taxi driver dropping us off in the middle of nowhere to one of us getting very sick, aka too drunk haha). but we pulled it off!!

after a life of epilepsy and both having brain surgery, we certainly have been to war together, as phylis says.
 
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I have never met anyone in person who has epilepsy (at least, not that they have said). I have, however, met some great online-people who I feel honored to call friends :)
 
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