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[Guest guest]

It is with a great deal of thought that I post the following:

I beleive I speak for all of us in realizing that this forum was

established to bring together a peer group with a common interest;

with common problems to help us gain knowledge about PID....to help

us through tough times.....to give us to the opportunity to share

what we have learned.....to share our challenges.....to share our

concerns.....to share our experiences......and to lend support to

eachother when we are facing challenges. Being faced with living

with PID, it is common to feel very isolated by the disorder in an

attempt to keep our children healthy. Unfortunately, it is also all

to common to become isolated by friends and family because of the

lack of understanding of PID. Many of us have come to forums just

like this one because we feel we are in a place where others

understand every aspect of the challenges we face with

PIDD....whether it be emotional or physical.

It was recently brought to my attention that a member of this forum

made the critical decision to share my very personal experiences and

posts with individuals outside of the forum. This was done so in a

malicious and damaging manner and it is difficult for me to

understand the motives of this person to utilize, what I felt assured

was private, information to defame me.

It is my perception and, that of the forum members, that the events

in our lives with respect to PID and the medical information we share

in this forum is done so in confidence. Prior to being allowed to

participate in the forum, we were all asked to agree that the forum

is confidential and that no information, at any time, is to leave the

forum. While unfortunate, it is the right of those participating in

the forum to know that there is a member who has illustrated complete

disregard for the rules and parameters that they were expressly asked

to abide by while giving the illusion of playing a supportive role.

In my opinion, this persons lack of judgement and inability to

respect boundaries has directly undermined the purpose of this

forum. I ask this person to re-evaluate their involvement and

realize that their actions have not only impacted my life, but have

impacted the forum as a whole and be assured, that I will not allow

the events that have taken place to play any other role than to

strengthen my dedication to improving the lives of not only my family

members, but other members of the PIDD family.

Sincerely,

Terri Cerda