On this episode, we sit down with Chris Barry, a rare disease patient and desmoid tumor survivor, dad, and civil engineer living in the San Francisco Bay Area. Diagnosed with familial adenomatous polyposis (FAP) as a teenager and later with a large desmoid tumor, Chris has faced immense medical challenges — including chemotherapy, major surgeries, and an intestinal transplant — yet continues to turn adversity into advocacy.

Through this conversation and his personal reflections, this episode shines a light on the realities of living with a desmoid tumor and FAP, a diagnosis often described as “benign,” or “not that severe” - a phrase that can be deeply misunderstood. Join Chris as he shines a light on what “benign” can actually mean for a desmoid tumor patient, where his journey took him, and how he became involved in the sarcoma community to help advocates for others who find themselves in a similar position.

Links:

Subtype Page

Sarcoma Patient Pathways Survey

Discussion Guide

Sarcoma Stories FB Group

Connect with Chris:

E-mail: cbarry04@gmail.com

Instagram @barry.dude