![]() ![]() ![]() In the course of conversations conducted in the field, we came face to face with a phenomenon that, while it was unrelated to our research objectives, raised ethical and clinical concerns that struck us as sufficiently fundamental to form the focus of a supplementary study. This is what occurred during our study on intergenerational dialogue. Thus it is common for researchers to encounter unforeseen phenomena which, because of their inherent significance, must be taken into account regardless of how closely they relate to the set of issues initially intended to be under study. In empirical-inductive anthropological studies, the environment is not controlled. The ethnographic methodological approach entails, among other things, observing the individuals and groups being studied in the settings where they interact. ![]() To conclude, we propose some approaches to reducing the negative impact of the confusion between NF1 and the “elephant man's” disease on the lives of patients and their family members and to ensuring patients receive better clinical management.Īt the time of writing of this article, we are conducting an ethnographic study on the state of intergenerational dialogue between parents and children with neurofibromatosis. Thereafter, we provide several examples of the impact this misconception can have on the health and well being of individuals with NF1 and their family members. In the present article, after presenting a methodological overview, we examine the persisting confusion between NF1 and Joseph Merrick's condition and the forms it takes in the print and online news media. Taking an exploratory approach, we opted to begin by examining the written media, because these have a known impact on social representations, and then follow up by investigating the medical community's treatment of the subject, because of the prominent role its members play in patients' lives and their influence on the quality of knowledge transmitted. To reach these objectives, we had to situate our informants' testimony (and testimonies) in its cultural, social, and medical contexts. Given current medical knowledge and the psychosocial and clinical consequences of confusing neurofibromatosis type 1 (NF1) with the condition suffered by Joseph Merrick, that is, Proteus syndrome, we wished: 1) to document the persistence and extent of this fallacy 2) to identify certain critical factors that contribute to its persistence and 3) to evaluate its impact on the health and well being of individuals with NF1 and their family members. As we will show in this article, despite Tibbles and Cohen's work and the further knowledge that has been acquired about the two genetic disorders since Tibbles and Cohen, the confusion of NF1 with the disease from which Joseph Merrick suffered continues to be perpetuated in medical and social representations, by current linguistic usage, and in some media reports. It becomes clear that this is a problematic situation once it is understood that confusing NF1 with Proteus syndrome and using the term “elephant man disease” as a name for both can have serious clinical, social, and psychological repercussions for individuals with NF1 and their families,. Esthetic considerations represent a psychological burden Courtesy stigma afflicts family membersĨ. Difficulty establishing social relationshipsĦ. Difficulty forming friendship in childhoodĦ. Psychological consequences of the diseaseĤ. Slight mental retardation in 1% to 8% of cases (no consensus among authors)ģ. Mental retardation in 10% to 15% of casesģ. Learning difficulties in 30% to 65% of casesĢ. Attention deficit (with or without hyperactivity) disorder in 40% to 50% of casesĢ. Facial features including dolichocephaly, a long face, down-slanting palpebrae, ptosis, depressed nasal bridge, anteverted nares, and open mouth position while at restġ. Capillary, venous, or lymphatic malformationģ. Lipomas or focal atrophy of adipose tissueĢ. Asymmetric, disproportionate overgrowthġ. Characteristic osseous lesion (sphenoid dysplasia, thinning of long bone cortex with or without pseudoarthrosisĢ. Neurofibromas (at least 2 of any types) and/or one or more plexiform neurofibromasĦ. Frequent: 1/3,000–1/4,000 live births worldwideĮxtremely rare: 1,5 cm after puberty >0,5 cm before pubertyĢ. ![]()
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