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Posted by Juliana on October 04, 1999 at 02:39:30:

I apologize ahead of time for my lack of correct English diction and terminology.
1. Why do I have to get information about E from internet that my neuro should be knowledgeable about (but isn't/won't tell me)
2. Why aren't all neuros treating PWE's required to be pharmacologists since they prescribe medications they essentially know nothing about
3. Why aren't PWE's treated same as terminally ill in eyes of local, state and federal government assistance programs.
4. Why is epilepsy a "condition" rather than a disease, since PWE's will eventually succumb as result of "condition" or treatment threreof.
5. there are 2.5 million pwe's in the country (USA), w/ #'s increasing daily.....Why are meds so expensive if so many pwe's are taking them... whatever happened to supply and demand.
6. Why is it so expensive to walk into a neuro's office, considering the # of pwe's... especially when all they do is write prescriptions (no better than a GP) for deadly meds, of which they have little, if any, knowledge. Why can't PWE's get lifetime scripts. PWE's are highly attuned to their minds and bodies.. if something goes wrong w/ med, we KNOW to go back and get another, different/better (HA) med.

Answer: just follow the $$ trail.. it's all a scam.. and since we aren't allowed insurance coverage, it's even better......it's a cash on the barrel head scam....no need to fill out forms.....jes hand 'em yer wallet...or credit card....

ONE REALLY ANGRY AND DISGUSTED PWE (who's sick and tired of the money/med merry-go-round)

PS....that Bill of Rights for PWE's....is a farce....a sick platitude....a utopian hope that will NEVER exist....(they really went overboard on that piece of PR...wonder who they were tryin to placate.....their own sense of guilt, maybe.....you can bet yer last prescription dollar that a non epileptic wrote it)

PSS......the "efforts" made by all E organizations , the disgusting plaques and awards.....the lies.....will, one day, come back to haunt the lot of 'em....hopefully real soon.

This letter will be sent to all of my local, state, and federal representatives....it's already been posted as an editorial in the epilepsy foundation of america's lil online newsletter....and it's been a week...haven't heard from them yet...will I EVER?!?!?! This PWE isn't optimistic .....

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