Sarah Bostic

When Medicine Has No Map: Medical Authority and Patient Expertise in Carney Complex

Limited clinical knowledge of rare diseases can leave clinicians without clear diagnostic or treatment direction, destabilizing medical authority and the expectation that clinician guidance is most credible. Research shows patients often build expertise through self-education and peer networks, but most studies examine conditions with specialist centers, guidelines, and robust advocacy. Less is known about ultra-rare diseases with tiny, globally dispersed communities and thin research pipelines. Using Carney Complex, an ultra-rare tumor-predisposition syndrome, this project asks how patients negotiate authority and expertise when clinical certainty is structurally unavailable. Drawing on 30 interviews and ethnographic observation, I analyze how patients decide what guidance to trust, negotiate boundaries around expertise, and how these processes shape care decisions, extending theories of professional dominance and lay expertise.