RT Journal Article SR Electronic T1 Neurofibromatosis Type 1: Persisting Misidentification of the “Elephant Man” Disease JF The Journal of the American Board of Family Medicine JO J Am Board Fam Med FD American Board of Family Medicine SP 112 OP 114 DO 10.3122/jabfm.2011.01.100219 VO 24 IS 1 A1 Claire-Marie Legendre A1 Catherine Charpentier-Côté A1 Régen Drouin A1 Chantal Bouffard YR 2011 UL http://www.jabfm.org/content/24/1/112.abstract AB Background: 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 have stated that they continue to be told the condition that afflicts them or their children is “elephant man's disease.” Today, even though well-established clinical criteria make it possible to diagnose and differentiate the 2 diseases, the confusion between neurofibromatosis type 1 (NF1) and elephant man's disease persists in both the media's and physicians’ representations.Methods: This was an ethnographic study in medical anthropology.Discussion: Some reference sources and print and online news media have all contributed to the persistence of the association between NF1 and elephant man's disease. Our observations suggest that confusing NF1 with the Elephant Man's condition harms the interests of those with NF1 and thus increases the burden of the disease.Conclusion: Changes of attitude regarding medical teaching and the media could dispel the confusion among physicians and journalists.