General Comment - What can I do???
From: Melody (mbyrne@paddocklabs.com)
Mon Nov 14 21:34:27 2005
As an ARD sufferer that is pretty new to this site I am still
overwhelmed by the pain all of are enduring and the many similar
experiences with our wonderful healthcare system in the US. I am
wondering what I can do as a sufferer and consumer to bring more
awareness of this to the public and the medical communities - many
strides have been made by others but I still feel such a strong need and
desire to DOP SOMETHING - I just don't know what.
There is also frustration in the fact that I have sent dozens of emails
and left voice messages for the company that is doing the Spraygel
(Confluent Medical) I finally today did get a voice mail back from their
Clinical person (Eric) but he did not say much of anything except that
there is one trial going on but it's not approved in the US (yes I knew
that much on my own) but I called him back and left another message
asking for anything else he can share with me - I will of course keep
the message board posted if I do find out anything.
I also find myself so thankful that I have not yet reached the
debilitating stage that many of you have - I can no longer live my life
to the "fullest" but I can manage to get out of bed and get to work and
do what I can around the house - I usually spend the evenings in bed and
exhausted - not every day is a bad day and I have to keep being thankful
for those days!!
I am overjoyed that I sent an email to Dr. Radan this morning and had a
message on my voice mail from him in a matter of hours!!!
I just would like to find out if there is anything at all that I can do
as a patient and consumer to increase the awareness of this disease that
we are all suffering with - I dread the thought of being confined to my
bed in a matter of months or years - and my heart goes out to those of
you that are already to that stage. Any feedback and/or comments are
welcome!!!
--
Melody
|
