Barbara Abernathy, a rare blood cancer survivor shares her experience with graft-versus-host disease (GVHD), a life-threatening condition that can occur after an allogeneic stem cell transplantation when the donor immune cells attack the recipient’s organs and tissues. She is joined by her physician, Dr. Hugo Fernandez, Chair and Medical Director of Moffitt Malignant Hematology and Cellular Therapy at Memorial Healthcare System to talk about the importance of being vigilant about changes in your health or the health of those for whom you care, and resources that offer helpful ways to monitor symptoms post-transplantation.

After earning her PhD and beginning her career counseling families of young patients with serious illnesses, Barbara Abernathy was in her 30s when she was diagnosed with polycythemia vera (PV), a rare blood cancer, which then developed into acute myeloid leukemia (AML). Barbara tried different treatment options and therapies, but none seemed to work. She eventually decided to have a bone marrow transplantation, knowing that she was likely trading in her cancer, for a chronic disease, graft-versus-host disease (GVHD).

Barbara did extensive research to find an experienced transplantation hospital and care team. In 2013, she received a successful bone marrow transplantation at the Moffitt Malignant Hematology and Cellular Therapy center at Memorial Healthcare System. Unfortunately, while the procedure cured her AML, Barbara and her care team soon noticed symptoms of GVHD which were appearing and disappearing unpredictably.

Although her diagnosis caused her much pain and frustration, she remained courageous and positive. Today Barbara is President and CEO of the nonprofit Pediatric Oncology Support Team, where she offers a uniquely compassionate perspective to the families she counsels, drawing on her own 20+-year journey with cancer. Barbara has served on the Board of The Leukemia & Lymphoma Society for more than a decade, has been a keynote speaker for Blood and Marrow Transplant events and is an active participant and advocate in various support groups. Barbara was the winner of Incyte’s MPN Heroes program, has been featured on Incyte’s GVHD awareness website GVHDNow.com, and has appeared in various oncology and healthcare trades in video and print interviews.

Barbara is continually frustrated when doctors don’t know what GVHD is and/or rely on her for information about the symptoms and treatment options. Despite her frustration, she has gained much wisdom from her experience about the importance of addressing symptoms early, and she passes on this knowledge to others. She, is glad to help spread awareness and encourages others to “speak up, be your own advocate.”

Liked it? Take a second to support healthprofessionalradio on Patreon!