Yesterday I had the opportunity to spend the day at the Leprosy Mission Hospital. It was my favorite day thus far in Delhi. I spent time talking with the patients, hearing their opinions on some educational materials as well as learning about their stories.
One man told me that he was depressed. He worked as a rickshaw puller and he was beginning to feel numbness in his hands (since leprosy affects the nerves of the hands, it can lead to lack of sensation and inability to use the hands) so was worried about the future of his family. He hoped to become a vegetable seller but wasn’t sure how to accomplish this. He only offered this information when I asked him specifically. He wasn’t asking for money, or assistance- just giving voice to the
Although it was hard to hear stories like that, I left feeling uplifted and humbled by the visit. To say that the patients were amazing is a huge understatement. At one point I was trying to construct an improvised tripod to shoot some video and all the patients were
helping me- even one who had no use of his legs. Truly incredible.
I took care to explain the reason for myphotographs (educational materials) and I asked the patients through a Hindi translator if they had any questions for me. They wanted to know my job, my age and where my family was from but, the translator explained, “they also want to let you know that they are thankful to you for taking the time to come here and take photos and listen to them.” Yes, they were thanking me- a random, probably intrusive visitor. It took me back to the feeling I have many times during medical school (I think I did the best job of voicing it here)– floored and honored by how incredibly generous people can be even when they are suffering.
A few thoughts about leprosy
Although some may think of leprosy as an antiquated or even medieval disease, it is still a huge problem in several countries and leads to significant morbidity and mortality. Although “global eradication” was achieved in 2000 which means that across the world there is less than 1 case per 10,000 people but that figure may be misleading as it takes into account countries where there are zero cases of leprosy. In 2011, for example, 219,075 cases were reported- most in areas of high endemicity- especially in Africa and South Eastern Asia.
For those who don’t know- leprosy is a chronic disease caused by Mycobacterium leprae (a mycobacteria is a kind of bacteria). The disease affects the skin, nerves (especially the peripheral nerves- nerves that go to places like hands and feet) as well as the lining of the upper respiratory tract and the eyes. It is spread through respiratory droplets (from the nose and mouth) via prolonged and frequent contact–it is NOT highly contagious.
What most people don’t know about leprosy is that is it completely curable with multidrug therapy (MDT). This treatment is completely free to all patients across the world. However, without treatment or even despite treatment, many patients suffer irreversible damage to their skin, nerves and eyes– leading to disfigurement, muscle wasting, paralysis and blindness. Additionally, there is still significant stigma for patients which leads to psychological distress, marginalization and discrimination.