Allogeneic stem cell transplantation, a type of stem cell transplant that uses stem cells from a donor and is used to treat certain types of cancers, can come with a lot of anticipation, questions, and concerns. While many will be cured of their cancer, some are faced with a new, incredibly challenging condition. Graft-versus-host disease (GVHD) may occur following a stem cell transplantation and is triggered when the new immune cells from the donor (the graft) begin to perceive the recipient’s body (the host) as unfamiliar and foreign. If that occurs, the donor cells launch an attack on the recipient’s organs and tissues, causing GVHD. The two major forms of GVHD, acute and chronic, affect different organs and tissues and can range in severity from mild or moderate to life-threatening, making it difficult to diagnose and an unpredictable disease.
Take action early
Barbara Abernathy, President and CEO of the Pediatric Oncology Support Team (POST), was diagnosed with GVHD following a stem cell transplantation. After an initial diagnosis of polycythemia vera (PV), a rare blood cancer, which then developed into acute myeloid leukemia (AML) in 2013, Barbara struggled with multiple therapies which led her healthcare team to suggest a transplant. Unfortunately, while the procedure cured her AML, Barbara and her team soon noticed symptoms of acute GVHD.
Acute GVHD typically develops within the first 100 days after transplantation, and often causes rashes or reddened skin, skin discoloration, nausea, vomiting, and abdominal cramps with diarrhea. Barbara has faced many symptoms, and noted they can sometimes appear and disappear “like a game of whack-a-mole.” GVHD is different for every patient, and symptoms can be unpredictable; sometimes acute symptoms progress into chronic GVHD, as was the case for Barbara. Chronic GVHD usually develops more than three months post-transplant and can involve more organs and tissues than acute GVHD does.
Despite the frustration this has caused, Barbara imparted some wisdom from her experience: “If you notice symptoms, it’s always best to address them early on and as they come, and not to wait too long before taking action.” Diagnosing and treating GVHD as soon as possible gives your care team the best chance to help you and determine how to best manage the condition.
Lean on available resources
While there is a lot to discuss with your healthcare team before and after a stem cell transplantation, educating yourself about GVHD, and the possibility of developing it, is important. Those who do develop GVHD shouldn’t lose hope, but rather look to their healthcare team and the GVHD community for support. This discussion guide and the resources on GVHD Now can be helpful in learning more about GVHD — no matter where you are or a loved one is in their transplantation journey. Learn about the condition, know what to watch for, and create a plan of action, because you can take charge of your GVHD.
For caregivers or those wishing to lend their support to the GVHD community, consider learning more about becoming a stem cell or tissue donor and join the Donate Life Month Registry. April is Donate Life Month and serves as a special time to advocate for the transplant community, specifically encouraging people to consider making a donation to help save those in need.
Barbara has found immense help through patient support groups and resources, acknowledging the role they play in taking each day at a time. “You have good days and bad days. But I can more often find good ones by staying positive, leaning on my support systems, and working with my healthcare team.” Keeping an open and active dialogue with her care providers helps tackle symptoms before they progress. Barbara encourages others to “speak up, be your own advocate. You know your body better than anyone.”
Visit Donate Life America to learn more about how you can rally behind the transplant community this April during Donate Life Month. Check out the resources and community education available to better understand organ, eye, and tissue donation, and what a donation could mean for so many.
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