Gender and care in the context of rare diseases: exploring nuances of emotional support and the division of household labor.

This article explores the ways in which having a rare skin disease (pemphigus) can reveal and redefine individuals' interpersonal relationships and how they experience and use the support of loved ones. It examines two aspects of "care": emotional support and practical support (through the division of household labor). It takes a relational ontological approach that is especially attentive to the biographical repercussions of care, and its gendered dimensions in particular.

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Introduction: Following the fire of the chemical products stored by the Lubrizol (Seveso upper tier) and Normandie Logistique companies on 26 September 2019 in Rouen, a research group bringing together general practitioners (GP), anthropologists and sociologists has undertaken a multidisciplinary qualitative investigation of general practitioners. The initial objective was to study the practice of primary care health professionals following the event. Initiated in February 2020, this survey was strongly transformed by the COVID-19 pandemic.

Taking care of oneself and others: The emotion work of women suffering from a rare skin disease.

In this article, we analyze the emotion work of women suffering from pemphigus, a rare skin disease. We suggest that this approach sheds new light on the upheavals caused by illness and more generally on the experience of illness itself. Our study draws on a series of 27 interviews with pemphigus patients whose average age was 57.

Engagement in leisure and physical activities: analysing the biographical disruptions of a rare chronic disease in France.

Using the biographical disruption literature, this article examines how the experience of illness - in this case, pemphigus - reconfigures engagement in leisure activities, and how these activities are integrated into the biographies of persons with a rare chronic illness. Among the changes imposed by the illness, leisure activities are especially enlightening, as they primarily depend on the body. The article is based on a study of 50 interviews of persons with pemphigus, a rare and chronic dermatological disorder.

Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic.

This qualitative study conducted in France of "individuals living with a pemphigus" (ILPs; N = 54) highlights the taxing diagnostic trajectory of those suffering from these rare autoimmune diseases. Beyond enduring a diagnostic period that may prove long, during their numerous medical appointments, these individuals internalize the expectations of the medical professionals who are treating them. In some cases, numerous inconclusive medical tests and, at times, a doctor's condescension may push the patient toward a process of renunciation.