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Was It Easy To Let Whomever You Know And Let Know Of The Condition You First Were Diagnosed With, Or Didn't Know What To Do About It? More

A MyEpilepsyTeam Member asked a question 💭
Englewood, CO

I at first having something I was I feeling that wasn't quite right happening to me at 6. and I found out from my mom, she told us kids in the family about her condition to me, I heard her and what she said to me about the epilepsy and kinda tried to understand what she said and had, but didn't really understand what it was she was going through, but after I had the weird stuff happening in my life with at 6yrs old, I didn't know what to do about it and just kept happening to me, but I was… read more

November 8
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A MyEpilepsyTeam Member

I never had a problem with telling others I have epilepsy. I figure if someone is around me enough they're going to witness me having a seizure, might as well tell them ahead of time what to expect.

November 10
A MyEpilepsyTeam Member

Dave my epilepsy comes from hydrocephalus I was born with.

November 8
A MyEpilepsyTeam Member

When I was 10, I fell on some ice going to school. That's when I started having Grand Malls really bad.My mother always told me she remembered me having petit Mall seizures up until then(I would laugh and clap my hands on my face). For years nobody knew what was causing my seizures. I was going to a doctor in Ypsi, MI. and the neurologist told me there was nothing else they could do for me and that they had run out of Meds to give me. That's when I got referred to the University of Michigan. It took me a year to get in, but my doctor got started right away. Up to that point, I had had several EEG's and Cat scans. But, I had never had an MRI. The MRI was what found my brain tumor and the doctors had then told me I was born with the tumor and Epilepsy. At that time, I was about 42-44 years old. For years I had been told by doctors I would out grow my seizures, that never happened, the tumor was still there. I was the first patient with an HH tumor to get the Laser Surgery done at the University of Michigan. The University of Michigan put a story up about me and my surgery on their Facebook and Twitter pagers at that time.

November 9
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A MyEpilepsyTeam Member

I have always told people that I have epilepsy. Truthfully, I feel safer knowing that others will know what is going on and how to look after me.

November 9
A MyEpilepsyTeam Member

I've never been afraid of telling anyone. It was never an issue at work until 2018.
When I start a position I ask my coworkers if there's anything I need to know regarding their health so I know what to do. Then they'll usually reciprocate & ask the same of me.
With relationships it gets a little more complicated unless they've known you for awhile

November 8

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