Leprosy has been a stigmatizing disease for centuries. Imagine yourself newly diagnosed with leprosy and while looking for information you find many negative images on the internet which reinforce your fears. The good messages, that leprosy is an infection curable with a 6 or 12 month course of antibiotics and is only mildly infectious, are hidden.
We aim to alter this negative balance through the New Face for leprosy project showing leprosy patients having a normal life, working and having a family. In 2018 we photographed and interviewed patients in Ethiopia. They openly discussed their experiences, fears and hopes. When we showed these pictures in Ethiopia in February 2019, one patient said “we are beautiful”, a new way of looking at herself.
We presented these positive pictures of people affected by leprosy at meetings and at the 20th International Leprosy Congress in Manila, in September 2019, and people affected by leprosy wanted this project to expand. We have photographed and recorded patient stories in India, to catch their voices. We asked them what had been tough and what had given them hope. Many patients had been delayed in diagnosis because their symptoms were not recognized by health workers. Many patients had tried natural or spiritual remedies. When told of their diagnosis most felt despondent and even suicidal and could not share their diagnosis. Participants had taken the 6 or 12 months’ course of anti-leprosy antibiotics that cures the disease. They had positive messages about taking antibiotics and knew that these were curative. They were often supported by staff from the referral centres and other patients. Women suffer a double jeopardy: they fear for their own position and worry about their daughters, fearful of the challenges in having a marriage arranged for them. These pictures show strong people who have overcome their diagnosis and even work in tough building and agricultural jobs.
We shall be showing these pictures at exhibitions in London and India and around the UK. We are publishing these pictures in Leprosy Review and hope that it will stimulate recognition that people affected by leprosy are strong in overcoming challenges.
These images will be available on the Lepra website. The project will be expanding to other countries. Globally about 220,000 new patients are diagnosed each year. A majority of these are in India.
This work was supported by Lepra, Colchester UK and Lepra Society India. The patient interviews arranged by Lepra Society, India. Interviews and translation was done by Srinivas Yanamandra. All participants gave informed consent.