Abandoning the stigma of leprosy

Abstract

For thousands of years, leprosy was thought to be a curse of the gods, a punishment for sin, or a hereditary condition. Since ancient Egyptian times, the word leprosy has invoked disturbing imagery of diseased and disfigured bodies. The term has been so heavily stigmatised that it has become synonymous with abandonment, social isolation, and condemnation to a lifetime at the margins of society. Gerhard Henrik Armauer Hansen's identification of Mycobacterium leprae as the causative agent of leprosy in 1873 left a deeply problematic legacy. In failing to obtain appropriate consent for his experiments—which consequently led to his being found guilty of misconduct—he represented the epitome of a system that professed to care for individuals while disregarding their voices. Indeed, historically the rights of people with leprosy have rarely been prioritised. In the USA, it was only in 1975 that policies of isolation for those affected were disbanded. Today, in many countries where leprosy remains prevalent, affected individuals continue to live as outcasts, leading to myriad mental health issues and perpetuating a cycle of ill health. To coincide with World Leprosy Day on Jan 27, we publish images from the New Face of Leprosy Project. Based in Addis Ababa, Ethiopia (with plans to expand to other countries), the project has captured images and personal journeys of those living with leprosy. Photography is a compelling medium through which to tell the human narrative, and this initiative gives a face to a historically much neglected disease. The vibrant portraits convey a wildly different perspective to stereotypical notions of the disease. These stories show people living healthy lives with their families, employed and financially independent, and keen to share their messages of hope with others who are affected. The positive images portrayed in the New Face of Leprosy Project offer powerful human stories for overcoming stigma. Participants talk of the importance of adhering to treatment, as well as overcoming personal losses, finding acceptance, and reintegrating into communities. A diagnosis of leprosy is not a medical death sentence, nor should it be a societal one.