Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > News and Events
Register FAQ Search Today's Posts Mark Forums Read

News and Events News related to bone marrow failure diseases

Reply
 
Thread Tools Search this Thread
  #1  
Old Fri Apr 20, 2007, 01:57 AM
Marrowforums Marrowforums is offline
Marrowforums.org
 
Join Date: Jul 2006
Posts: 919
NMDP Sponsors Survivor's Conference on Life After Transplant

The Office of Patient Advocacy of the National Marrow Donor Program will host Living Now: A Survivor's Conference on Life After Transplant for adult marrow or cord blood transplant survivors, caregivers, family members, and health care professionals. The Conference will be held in two locations:
  • San Francisco - Saturday, June 9, 2007 (8am-4:30pm)
  • Phildelphia - Saturday, June 16, 2007 (8am-4:30pm)
The Conference will present the latest in post-transplant research and information, including quality of life issues, emerging cancer survivorship issues, and financial and legal issues related to transplant. Attendees can learn ways to strengthen their own sense of well being, refresh existing relationships and develop new ones, and join survivors and family members to celebrate and make the most of living now.

For more information and registration, visit Living Now.
Reply With Quote
  #2  
Old Wed Jul 4, 2007, 03:01 AM
Ruth Cuadra Ruth Cuadra is offline
Administrator
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 616
About the NMDP Survivor's Conference

Neil and I attended the Survivor's Conference in San Francisco along with about 90 other patients, caregivers, and family members who are dealing with life after transplant. The conference agenda resulted from the topics cited in an NMDP survey of transplant patients, designed to find out what information patients thought was most important to them after transplant.

It was a very, very well-run conference. The presentations were generally more descriptive than technical. They provided an overview of possible late effects of transplant and had breakout sessions on chronic Graft vs. Host Disease (GVHD), post-transplant fatigue, financial/insurance issues, relationships and intimacy, and meditation/guided imagery. Each patient received a notebook containing all the slides used in the presentations--it was nice not to have to worry about listening and taking notes at the same time--as well as speaker biographies, the list of exhibitors, and information about the NMDP Office of Patient Advocacy.

We had hoped to find out if there are any treatments we hadn't heard about for GVHD-related muscle cramps, which is the main medical issue I'm dealing with right now. When I brought up the topic during a Q&A session, several other people chimed in that they are experiencing similar cramps. It became clear to us that many people experience these muscle cramps, and many of them think they are the only ones facing the issue! We learned that there isn't anything definitive to do about the cramps, as far as the doctors know. We hope to see more research done in this area.

The camaraderie among transplant patients was wonderfully supportive. Most attendees were only 1-2 years out from transplant, so their GVHD issues were particularly pressing. A few of us were 5 or more years out. One man was 10 years out, while another was attending the conference only 120 days after transplant! The veterans provided encouragement to the newbies and the newbies helped remind everyone how very lucky we are to be survivors.

The conference was repeated a week later in Philadelpha. Did any of you attend the conference there?

Regards,
Ruth Cuadra
__________________
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Free Evening Program for Transplant Survivors in Washington, DC on Dec 1, 2009 Marrowforums News and Events 0 Fri Nov 20, 2009 05:58 PM
Transplant Survivors Conference, September 2008 Marrowforums News and Events 0 Fri Jun 6, 2008 02:27 AM
NMDP Provides Transplant Information Marrowforums Transplants 1 Tue May 8, 2007 04:00 AM
Transplant Survivors Conference Marrowforums News and Events 0 Fri Oct 13, 2006 12:58 PM


All times are GMT -4. The time now is 05:52 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org