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Old Fri Apr 20, 2007, 01:57 AM
Marrowforums Marrowforums is offline
Join Date: Jul 2006
Posts: 908
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.
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Old Wed Jul 4, 2007, 03:01 AM
Ruth Cuadra Ruth Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 612
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?

Ruth Cuadra
Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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