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Posted by Anna on July 24, 2000 at 16:00:38:

In Reply to: Re: ignorance posted by Alexis on May 09, 2000 at 19:20:59:

: : I was wondering what people thought about the general publics ignorance about epilepsy. My
: : son has epilepsy and I am amazed that there are still people out there who think putting a stick
: : in someones mouth is what should be done when someone is having a seisure.

: : What do you think?

: : Sarah
: Sarah, I am 55 years old and have had seizures since I was 22. Ignorance is bliss for some people, but reality is another thing. My husband served on the epilepsy foundation board and I did a local commercial for them. When we were young our friends didn't take too well to any of this and we lost some friends. My own mother thought I should be in an institution. I hide it from people at work or they wouldn't hire me. Other than the epilepsy foundation I don't know of anyway to get people to change. Your child will become stronger because of this and very independent. I hope your child is controlled.

I am 30 and I was diagnosed with grand mal seizures at 21 years old. People are not taught about seizure protocol and many medical "professionals" have never dealt with seizures first hand. Many myths are out there and epilepsy does not have a good Hollywood spokesman to raise public awareness or research funds. I do not tell people that I have seizures although I did at first because of their negative reaction. I have often wished that I had a terminal illness since people are more likely to try to be understanding about the symptoms and effects of them. Maybe the world will change so that people will educate themselves, but my suggestion is that I would not ever tell an employer that I have seizures and I would be very careful about filling out medical forms since coverage is often denied altogether for those with seizures. It is better to say that the first seizure was febrile or related to a fever and that the medication is being continued for other reasons other than epilepsy. I am glad that you are a caring mother and your son is lucky to have you. A

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