Dear Group:

I have been posting to epilepsy-related Yahoogroups for nearly three
years now. It was through the exchanging of e-mails with
ordinary people like you that extraordinary things began to happen in
my life. Let's face it, only through the Internet would a
woman in German introduce a guy like me (living in Atlanta, GA at the
time) to an epilepsy clinic in Santa Rosa, CA. A year
later thanks to that clinic and for the first time in my life, I know
why I have epilepsy. But, that is not all. I am drug-free and
have my seizure disorder under control. Indeed, good things can
happen by sharing needs on epilepsy-related Yahoogroups.

You would think that everybody welcomes "good news" - regardless of
how that news was achieved. Since participating in
Yahoogroups, I have learned of many different ways people with
epilepsy have addressed their problems. Some have used
medication. Some have used surgery(including the installation of a
VNS device). Some have used diets. Some have used
vitamin therapy. Some have even used EEG Biofeedback. If I have
learned anything about epilepsy, it is that there is no
"one-size-fits-all" solution with regard to this affliction. Every
person with epilepsy is a unique case and deserves to be treated
that way.

To my surprise, I learned a few days ago that not everyone
applauds "good news" - unless it is delivered in a mainstream
manner. During last weekend, someone on a Yahoogroup (which will
remain nameless) went to a website for a clinic that treats
epilepsy. They read on the website that epilepsy was described as
a "behavioral problem." They did not make inquiry as to
what that meant at the website where they learned this information.
Instead, they went ballistic and began to trash the clinic on
their Yahoogroup. This in turn made me go ballistic. Unfortunately
for me, the person who initially went ballistic owned the
Yahoogroup. So, guess what happened to me? I was kicked off that
Yahoogroup.

You would think that any person - whether that person had epilepsy or
not - would realize that epilepsy is a "behavioral
disorder of the brain." After all, any time you take as much as a
sleeping pill, that medication is going to change the behavior of
the brain. That is why after taking sleeping pills, people are able
to sleep. The behavior of the brain has been altered by the
medicine. But, certain people on that Yahoogroup did not see it - or
understand it - that way. Before being kicked off the
group, I got the feeling the term "behavior" angered people. For
some reason, to tie the words "behavior" and "epilepsy"
together was wrong. Instead, they must remain as mutually exclusive
terms. One must not have anything to do with the other.
To believe otherwise, was somehow blasphemy. At least, that was the
impression I got.

I would appreciate a little insight from this group with regard to
the following two questions:

1) Why would a Yahoogroup designed to help people who have epilepsy
not applaud success through alternative therapies?

2) Why would the same Yahoogroup be upset with a statement indicating
a relationship between behavior(of the brain) and
epilepsy?

I appreciate your feedback.

Lamar Morgan