Abstract
BackgroundDuring informal interviews in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents, many members of Canadian neurofibromatosis associations stated they continue to be told the condition that afflicts them or their children is the “elephant man's” disease. Today, even though well established clinical criteria make it possible to diagnose and differentiate the two diseases, the confusion between NF1 and the disease of Joseph Merrick, the “elephant man”, persists in both media representations and those of physicians. The objective of this article is to document the persistence of this confusion, to identify the factors that contribute to it, and to identify its impact on the well being of individuals with NF1.MethodologyPreliminary stages of an ethnographic study.Principal FindingsOur findings show that some reference sources, past medical training, and print and online news media have all contributed to the persistence of the association between NF1 and the disease of Joseph Merrick, the “elephant man”. Our observations suggest that this misconception can have negative medical, social, and psychological impacts on patients and their families and thus increase the burden of the disease.ConclusionsChanges of attitude regarding medical teaching and the media could lead to definitively clearing up the confusion.
Highlights
Principal Findings: Our findings show that some reference sources, past medical training, and print and online news media have all contributed to the persistence of the association between NF1 and the disease of Joseph Merrick, the ‘‘elephant man’’
During informal interviews in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents, some members of Canadian neurofibromatosis associations stated to the authors that they continue to be told the condition that afflicts them or their children is the ‘‘elephant man’s’’ disease
We looked for articles published from 1909 to the present, since it was in an article by Parkes Weber published in 1909 that the premise that Joseph Merrick suffered from NF1 was mentioned for the first time
Summary
During informal interviews in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents, some members of Canadian neurofibromatosis associations stated to the authors that they continue to be told the condition that afflicts them or their children is the ‘‘elephant man’s’’ disease. This puzzled us, because the identification of neurofibromatosis with the condition from which Joseph Merrick, the so called ‘‘elephant man’’, suffered does not correspond to current medical knowledge. During informal interviews in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents, many members of Canadian neurofibromatosis associations stated they continue to be told the condition that afflicts them or their children is the ‘‘elephant man’s’’ disease. The objective of this article is to document the persistence of this confusion, to identify the factors that contribute to it, and to identify its impact on the well being of individuals with NF1
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