Stigma and leprosy presentations, Nepal
Objective: To explore the assumption of leprosy stigma as a major deterrent for early leprosy presentation in Nepal.
Results: From 2015 onwards, the International Nepal Fellowship (INF) has carried out a research project about current leprosy delays within its working area, the West and the Mid-West Development Regions of Nepal. In one of the initiatives within the project, a total of 100 newly diagnosed leprosy cases from four areas were met with and interviewed at their place of treatment and/or in their communities. Eighty-one out of 99 participants (one reply missing) reported that they had not suspected leprosy before the diagnosis. Not having suspected leprosy, the leprosy stigma was something to grapple with after the diagnosis rather than before. Most did so by concealing the diagnosis. Others before them had done the same.
Conclusions: In this sample, the direct influence of leprosy stigma upon delay in diagnosis was found to be marginal, as most participants had not suspected leprosy ahead of the diagnosis. Indirectly, however, there was and is an influence. Expectations and fear of the leprosy stigma cause those able to conceal the diagnosis to do so and those able to conceal are mainly those with less advanced signs and symptoms of the disease, the majority of present day patients in Nepal. And thus, the traditional image of leprosy as a disease of outstanding deformities is rarely challenged, which in turn means that most new patients do not suspect their condition to be leprosy. Had it been challenged, through better public awareness of the early signs of leprosy, for example, the health-seeking process is likely to have been different.