Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Laurie & Everyone, Recently I had an opportunity to talk with Dr. Pramoud Mistry, he is director of pediatric hepatology at Yale Medical Center, about this topic. He feels PSC patients need to petition UNOS for an exception to the MELD . He said this support group is perfect for this. He mentioned another rare pediatric liver group that successfully accomplished this, unfortunately I don't remember which disease group but I can ask. Wouldn't it be great if this group and PSC Partners organized around this issue? I suggest we come up with a plan. Let's brain storm. Grassroots groups have accomplished many things against great odds, I don't see why we can't do this too. Regards, Reggie Jecy's Mom UC/PSC-1996 I justed wanted to mention some odd facts regarding PSC.My husband's MELD even now has stayed between 13 and 15How can he be so sick at just this score___ Messages in this topic (2) Reply (via web post) | Start a new topic Messages | Files | Photos | Links | Database | Polls | Members | Calendar MARKETPLACE From kitchen basics to easy recipes - join the Group from Kraft Foods Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe Recent Activity 5 New MembersVisit Your Group Need traffic? Drive customers With search ads on Yahoo! Group Charity Give a laptop Get a laptop: One laptop per child Special K Group on Yahoo! Groups Join the challenge and lose weight. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Tell me what to do!! Dawn > > Laurie& Everyone, > > . He feels PSC patients need to petition UNOS for an exception to the MELD . > Regards, > > Reggie > Jecy's Mom > UC/PSC-1996 > > 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.