Pemphigus : revue de la littérature

Joly, P.; Sin, C.

doi:10.1016/j.annder.2011.01.016

Cited by 12 publications

(11 citation statements)

References 142 publications

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“…According to the specialized biomedical literature, the average ILP is between 50 and 60 years of age, and the disease affects males and females indiscriminately (Joly & Sin, 2011). Our study included 54 interviews: 36 female and 18 male pemphigus patients whose average age was 55 years (the youngest was 22 and the oldest was 90).…”

Section: Participantsmentioning

confidence: 99%

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Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic

Hénaff

Héas

2018

Qual Health Res

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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. This article relates the ILPs’ critiques of the medical work conducted during the trying diagnostic period.

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Section: Participantsmentioning

confidence: 99%

“…Each year, there are between one and two new cases per million inhabitants, depending on the type of pemphigus in question (Joly, 2008;Langan et al, 2008). Pemphigus vulgaris, the most common type of pemphigus (75% of all cases), affects around one in 2,630 people in France (Joly & Sin, 2011).…”

mentioning

confidence: 99%

Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic

Hénaff

Héas

2018

Qual Health Res

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“…According to the literature, the average individual living with pemphigus is between 50 and 60 years of age, and men and women are affected equally (Joly and Sin ). Our study included 25 interviews: 15 women and 10 men whose average age was 55 (range: 36–75 years old).…”

Section: Methodsmentioning

confidence: 99%

“…These visible physical manifestations disrupt all manner of everyday interactions. Blistering can affect mucous membranes of the mouth and genitals, and less commonly the eyes and anus (Joly and Sin ), so when inflammation acts up, everyday activities such as bathing, dressing, moving around, and eating are often limited. Treatment is available but does not rule out the possibility of relapse, and more significantly, it can have side effects, which are particularly unpleasant with corticosteroid medications.…”

Section: Introductionmentioning

confidence: 99%

“…A disease is ‘rare’ when its statistical occurrence rate is low, defined in Europe as touching fewer than one in 2000 people. One or two cases per million of pemphigus vulgaris, the most common form, are diagnosed each year in France (Joly and Sin ). This rarity implies a range of challenges, including a dearth of experts and treatments, difficulties getting diagnosis and information, and isolation (Le Hénaff and Héas ).…”

Section: Introductionmentioning

confidence: 99%

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

Hénaff

Héas

2019

Sociology Health & Illness

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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. The ways in which they relate to leisure activities give a new perspective on biographical disruption. The first striking observation is how diverse they are: illness does not level social differences or lived experience, and can even further consolidate commitment to engagements. We identified four types of engagement in leisure activities: disengagement, which reveals biographical disruption; adapted engagement, leading individuals toward low‐risk physical activities; engagement in medicalised normalisation; and salutary engagement.

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