[Understanding people with Steinert’s disease to better care for them.]

INTRODUCTION: the lifestyles of people with myotonic dystrophy type 1 (DM1) are poorly understood and yet their consideration is essential for effective long-term care. The nursing care provided in the reference centers integrates the diversity clinic of this disease in interdisciplinary care, but it is more complicated from a relational point of view. The objective of this qualitative study was to understand the ways of living for a person with DM1, his body and the coping strategies developed.

METHOD: this research in social sciences and nursing is based on a problem of care and is based on an ethnosociological problematization.

RESULTS: the aim is to make visible the evolution of the body affected by Steinert’s disease, participating in the construction of the body pattern and the social identity of the person, which allows him to maintain himself in a “normal” daily life as long as possible but can reach limits imposing him radical reorientations in his life. These results are discussed in the light of a framework of analysis based on the four levels of reading of the body proposed by Nicolas Vonarx: the “material body” ; the “capable body”, the “body feeling” and the “knowing/judging body” ; “socializing body” will be proposed to discuss the place the body takes for people living with a DM1 when it comes to living within a normative society.