Re: A position of Passion /

October 8, 2002

In a message dated 10/06/2002 13:32:09 US Eastern Standard Time,

no_1_red_head@... writes:

......sadly most of those that suffer with CP ... will end up in this same

position at some time ... we have a responsibility to speak up, and make our

voices heard....We have to be proactive in our treatment. We have to be vocal

about how we feel, and we have to stand our ground when they tell us they

don't know... ..<<<

This is so true. Just because the doctor or healthcare team cannot determine

the cause or cannot even find anything wrong with your pancreas, that doesn't

mean there isn't anything wrong with your pancreas, it just means that with

the tests and means available today, there are no results that indicate a

problem.

As Peg Bates, Mass. State Rep. continues to say, " We are in unchartered

territory. "

It has been the fact that regardless of the cause or the particular journey

our disease has taken us own, the destiny was the same, as this disease is

progressive, debilitating, and deteriorating. This disease is fatal. The

development of auto-islet cell transplantation has put a deviation in that

graph. There isn't enough data nor time has passed to have a clear

determination on the mortality rate of this disease.

Our efforts have, however, made a significant improvement in the quality of

life standards, by which most of us now mark and measure our life. Yes, it is

unchartered territory, and a journey, whose destiny I am committed to change.

Karyn , RN

Founder / Exec. Director

KarynWms@.../

Pancreatitis Association International

Many People, Many Faces, One Voice

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