Sensing Rhabdomyolysis: Building Sensorial Knowledge in Inherited Metabolic Disorders in Poland

Sensations have emerged as an increasingly important topic in anthropological studies of health and disease. In this article, I draw from ethnographic research conducted among people living with selected rare inherited metabolic diseases (IMDs) and their caregivers in Poland, focusing specifically on recurrent rhabdomyolysis, a long-term complication that affects energy-consuming organs and muscles. Employing insights from sensorial and medical anthropology, I examine how people with IMDs and their caregivers, as parent-patient units, build anticipatory sensorial knowledge that enables them to attend to bodily sensations symptomatic of elevated creatine kinase levels, which are characteristic of rhabdomyolysis.