Uncertainty and Regimes of Temporality Among Girls and Women with Turner Syndrome in France

Based on ethnographic fieldwork with people living with Turner syndrome in France, in this article we analyze the relationship between uncertainty and temporalities specific to rare diseases. We first show how the syndrome requires a work of interpretation to decipher an opaque body and the desynchronization between bodily changes and age positions. We then analyze how the delay in information and diagnosis can change the perception and consequences of the disease. Finally, we show how new treatments or biotechnologies provide new imagined futures, multiplying choices but also the risk of failure and some ethical dilemmas in the contemporary French context.