Epilepsy Information, Stigma Poll and Lack Of Earning

On July 24th, 2002 I responded to a poll that asked if there was still a stigma related to epilepsy. I said YES!

Also, in reply to the poll I replied: I have had epilepsy, catamenial epilepsy for almost 41 years. I've been intractable, I am photosensitive but am on medication to control it. It took a long, long time to find the right pills. I have been overdosed, misdiagnosed, thrown around like a "number on a doctor's file", and believe me, even doctor's don't know the meaning of the word "seizure"!

You never know until you experience one. I used to experience up to 300 simple partials per day.

I have complex partial and simple, but they feel the same exact way.

I've used biofeedback therapy successfully, aromatherapy, especially jasmine, and a field called psychoneuroimmunology.

I studied the books of Joan Borysenko, who was my friend, writing about this.She gave me an author's copy of her book "A Pocketful of Miracles".

I have helped others with this disorder as the President, CEO and founder of The Epilepsy Connection. I made no money but I saved lives and helped others. The more I helped others the better I would feel. The healthier I would become. I'm on a new drug now for 1 week called Keppra, that is working well.

I am in the middle of a disgusting divorce battle that unfortunately my ex-husband didn't think enough of me to tell his company that he divorced me! I used to pay $5 for my medication. I now pay hundreds but am looking for other insurance mediums.

Out of 79.39% or 104 people total; felt that there was a stigma. Total votes 131!

Stigma (epilepsy) (Score: 0)by: Anonymous on: Friday 07 June @ 11:23:02

I am startled to find only 1 person in 3 is aware of the degree of stigma which persists to the present day with regard to epilepsy. I am even more bewildered that the subject receives so little attention. I myself suffered my first (idiopathic) seizure at 14, now 40 years ago. It did nothing to inhibit my school or university career. The real problems developed when I entered the employment world. I was excluded from further training after graduation on medical grounds - without an examination, and despite the support of both my GP and my neurologist. Even so, I did manage to achieve my only ambition - to teach, which I did with unquestioned success.

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