Surviving, Thriving, and Leading: Sue Stewart on GVHD and BMT InfoNet скачать в хорошем качестве

Surviving, Thriving, and Leading: Sue Stewart on GVHD and BMT InfoNet

In this episode, we sit down with Sue Stewart, a 36-year survivor of acute myeloid leukemia (AML) and the founder of BMT InfoNet. Sue walks us through her transplant journey, beginning with a difficult diagnosis in the late 1980s and the grueling induction chemotherapy that followed. With limited treatment options, she opted for an autologous bone marrow transplant—a relatively new and uncertain procedure at the time. Despite the intense side effects, including confusion and delusions, Sue recovered and slowly rebuilt her life. Her story is one of strength and long-term resilience, shaped by medical challenges and a determination to help others facing similar paths. After surviving her transplant, Sue felt driven to understand her experience and quickly saw the gap in patient-centered information. A high-profile court case involving bone marrow donation misinformation pushed her to act. In response, she started a small newsletter to provide reliable, understandable transplant information. What began with 700 names (pre-Internet) grew rapidly and became BMT InfoNet, an organization that now supports over 20,000 people weekly with resources, educational content, and peer support. We explore how GVHD care has transformed over the decades. Sue outlines progress in diagnostics, treatment options, and the move away from long-term steroid reliance. Her organization has helped shift the focus beyond survival to long-term quality of life, leading to the creation of survivorship clinics and a deeper understanding of transplant-related complications. Sue introduces us to BMT InfoNet’s key programs, including Caring Connections, which matches patients and caregivers with peers based on similar experiences. We also learn about their online, professionally moderated support groups, offered to different patient communities. These groups have been instrumental in helping individuals process their experiences and stay connected. The organization’s educational materials and annual survivorship symposium continue to empower patients to become active members of their care teams. Sue emphasizes the importance of recognizing symptoms early, understanding treatment options, and advocating for proper care—especially for GVHD, which many local doctors may not fully understand. Finally, Sue shares the story of how one patient’s experience with ocular GVHD and scleral lenses led to a wider medical breakthrough. It's a powerful reminder of how patients can change the landscape of care by sharing their stories. BMT InfoNet's mission remains clear: provide support, share knowledge, and give voice to those on the transplant journey. BMT InfoNet: https://www.bmtinfonet.org Contact Email: [email protected] Thanks to our Season 19 sponsors, Incyte and Sanofi. https://incyte.com/ https://www.sanofi.com/en 00:40 - Introduction to Sue Stewart 01:15 - Sue’s AML Diagnosis and Transplant Story 06:33 - Founding BMT InfoNet 10:05 - Life Before the Internet: Lack of Resources 12:43 - Progress in GVHD Treatment 15:25 - Peer Support Through Caring Connections 17:16 - Online Moderated Support Groups 18:58 - Educational Resources on GVHD 21:57 - GVHD Specialist Directory 24:05 - Annual Survivorship Symposium 26:17 - Financial Assistance for Patients 27:39 - GVHD Wall of Hope and National GVHD Day 30:01 - Final Story: How Patient Experience Changed GVHD Care National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268. nbmtLINK Website: https://www.nbmtlink.org/ nbmtLINK Facebook Page:   / nbmtlink   Follow the nbmtLINK on Instagram!   / nbmtlink   The nbmtLINK YouTube Page can be found by clicking here. To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd