TY - JOUR 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 SP - 112 LP - 114 DO - 10.3122/jabfm.2011.01.100219 VL - 24 IS - 1 AU - Claire-Marie Legendre AU - Catherine Charpentier-Côté AU - Régen Drouin AU - Chantal Bouffard Y1 - 2011/01/01 UR - http://www.jabfm.org/content/24/1/112.abstract N2 - 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. ER -