Barbara Abernathy, PhD, Pediatric Support and Navigating GVHD & Survivorship

Dr. Barbara Abernathy is the President and CEO of The Pediatric Oncology Support Team, (POST) serving South Florida.  She was already working at POST, helping pediatric cancer patients and their families, when she herself was diagnosed with Polycythemia Vera, a blood cancer, in 1996.  She kept her diagnosis to herself.

In 2013, Barb's disease morphed into AML, and she was in urgent need of a bone marrow transplant.  A match, a young man in Germany, was found.   Barb's intimate knowledge of cancer treatment proved both blessing and a curse.  She quite honestly was more afraid of Graft Versus Host Disease (GVHD) than she was of dying from the transplant.

After her bone marrow transplant at Moffitt Cancer Center in Tampa, she dealt with acute GVHD of the eyes, gastrointestinal system (GI  system), skin, and liver.  Her acute GVHD rolled right into chronic. Her existing symptoms persisted, including hair loss due to alopecia.  People assume she's still in treatment because of the hair loss.

Barb is very honest about the challenges of living with GVHD.  Not being able to sweat in Florida requires a lot of planning and care.  There was also the isolation during the pandemic.  Fatigue is also an issue.  Sometimes it's challenging just to keep the house clean.  This affects her desire to have friends over; it's not that she doesn't want to see them!

Her personal experience has led to greater connections with her patients.  She's walked the walk and can talk the talk.  Barb talks about the importance of advocating for yourself or your child with your medical team. We also spend some time on how friends and family can help.  Sometimes it is as easy as changing the plan to better accommodate the survivor--maybe a breakfast date instead of a dinner date.  It's important to LISTEN and not just offer something you  think they need.  Peer support is also key. 

Between patients and her own journey, Barb has many years of experience with GVHD.  She talks about the new advances in therapy, how far we've come, and how it's given her hope for future treatment.

Barb's nonprofit, Pediatric Oncology Support Team (POST) Website: https://postfl.org/

Other Resources

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

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

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Thank you to this season's sponsors:

Supported by Pharmacyclics, an AbbVie Company (https://www.pharmacyclics.com/) and Janssen Biotech, Inc. (https://www.janssen.com/)

Incyte: https://www.incyte.com/

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