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.orgContact Email: [email protected] to our Season 19 sponsors, Incyte and Sanofi.https://incyte.com/https://www.sanofi.com/en00:40 - Introduction to Sue Stewart01:15 - Sue’s AML Diagnosis and Transplant Story06:33 - Founding BMT InfoNet10:05 - Life Before the Internet: Lack of Resources12:43 - Progress in GVHD Treatment15:25 - Peer Support Through Caring Connections17:16 - Online Moderated Support Groups18:58 - Educational Resources on GVHD21:57 - GVHD Specialist Directory24:05 - Annual Survivorship Symposium26:17 - Financial Assistance for Patients27:39 - GVHD Wall of Hope and National GVHD Day30:01 - 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/Check out our valued nbmtLINK resource books, some for sale, some free as downloadable, https://www.nbmtlink.org/shop/nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINKFollow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/The nbmtLINK YouTube Page can be found by clicking here.This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.The Marrow Masters Podcast is produced by JAG Podcast Productions: https://jagpodcastproductions.com/ Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.