In this episode, we speak with Synary Be, a resilient survivor of acute myeloid leukemia (AML), who shares her powerful journey of enduring three bone marrow transplants over eight years. Diagnosed suddenly in March 2017, Synary’s story begins with a high fever that led to a shocking diagnosis: 93% leukemia. From that point on, her life transformed into a series of hospital stays, treatments, and moments that tested her strength and spirit.

We learn how her first transplant involved two umbilical cord donors, one from the U.S. and another from Singapore. When that failed to graft, her younger brother flew from Australia to donate for her second transplant—a 50% match. After two years in remission, she relapsed again and required a third transplant, this time from her older brother, right in the midst of the COVID-19 pandemic. With travel restrictions in place, the donor cells had to be processed remotely and shipped to Stanford, showcasing the remarkable role of medical technology in saving lives.

Despite being given only a 50% chance of survival for her third transplant, Synary put her trust in her doctors. Though she relapsed again, she now maintains remission through chemo pills. With no long-term data available for this new medication, she continues treatment cautiously and with optimism, trusting in the advancement of medicine.

Synary spends some time opening up about the chronic graft-versus-host disease (GVHD) that followed her transplants. She explains its impact on her lungs, eyes, mouth, nails, and skin, detailing both the physical symptoms and the treatments that have helped her reclaim daily life. From scleral lenses to serum tears, to pulmonary rehab and steroid creams, she educates us on the challenges and management of GVHD.

Beyond the physical toll, Synary discusses the mental health struggles tied to long-term illness—particularly anxiety from repeated hospitalizations. She emphasizes the importance of therapy, meditation, support groups, and the courage to seek help. Her words serve as a reminder that managing chronic illness includes caring for both mind and body.

Synary's story wouldn’t be complete without acknowledging her support system. Her husband, who acted as her full-time caregiver through 300 cumulative days of hospitalization, and her three children, endured major sacrifices. Friends and community support filled in the gaps, underscoring that no one should navigate transplant recovery alone.

Even in the face of isolation, fatigue, and anxiety, Synary finds joy in simple pleasures: watching Christmas movies, going for walks, and spending time with family. Her message is clear—life is still good. And GVHD, while challenging, cannot take away her joy.

Calm App — https://www.calm.com

Thanks to our Season 19 sponsors, Incyte and Sanofi.

https://incyte.com/

https://www.sanofi.com/en

00:40 - Introduction to Synary Be
01:20 - AML Diagnosis and First Transplant
03:10 - Transplants and Donor Challenges
04:06 - Relapses and Chemo Maintenance
06:44 - Living with GVHD
12:15 - GVHD Symptoms and Treatments
13:40 - Support System and Caregiving
15:34 - Isolation After Transplants
16:38 - Mental Health & Anxiety
19:03 - Coping and Finding Joy
20:36 - Final Thoughts and Message of Hope

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

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To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

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