Guest guest Posted November 6, 1999 Report Share Posted November 6, 1999 , Welcome! So glad Liz led you to the group. , who is the moderator and website point of contact, that started this group. Not sure how long ago she started it but I have been with it a year now. Others have been here longer. What a relief it is to have a group that shares information about a disease that effects lots of us. I know you will find it very informative and supportive. You will get to know lots of lovely people and the problems that we have with PSC. Again, welcome to the group. Larry - land - PSC-96 UC-95 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 1999 Report Share Posted November 6, 1999 Welcome : My husband was diagnosed with PSC last month. He is 31 and we have a 12 year old daughter. This is a great group of people. Your inquiry about a conference has got me thinking. I belong to another support group for PBC (similiar disease to PSC). I don't get involved in the conversations, but I do read the messages. I think they organize a yearly conference that includes doctors etc who speak about the disease. They also have doctors that they have 'recruited' to answer questions and attend chats. It's kinda cool. I wonder if we could do something like that?!?!? Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 , Welcome to our group. This support group is so supportive and well informed, I don't know what I did without them! Gracie, wife of Ed, PSC, dx '93 duxte-@... wrote: original article:/group//?start=6265 > Hello! > > On Monday night, while reading the bulletin boards following Walter Payton's > passing, I came across 8 other people who either have PSC or know someone > with PSC. I have been in contact with them and we all recognize the need for > a support group. One of those people, Liz, told me about your website. > However, I have had some difficulty downloading your site, but what a relief > to know that someone has formed a support group. > > I was unaware that you were " out there " so I have been actively trying to > form my own. When did you join together? How many people have joined your > group? Have you had a conference yet? > > I can't wait to hear from you and to offer any assistance I can to further > the support group membership. > > What's my connection? My husband has PSC. He is 34 and we have two children. > > Hope to hear from you soon, > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.