I used to think of leprosy as an ancient disease. By ancient, I mean dead. Buried with the skeletons of all its victims. A bygone biblical disease. Found in the chronicles of our history, moving through ancient civilisations, stealing the lives of thousands of people, and evading generations of scientific theories that sought to destroy it.
But somewhere in the course of our history, I thought it had been eradicated. I thought it was just one of the many diseases that was once a death sentence for our species, but now ceases to exist. I had no idea that even today, the disease that was once called “the living death”, still destroys people's lives.
Leprosy colonies still exist
You’ve probably heard stories about leprosy victims who were cast out from their communities out of fear of transmission. Stories of “lepers” who were forced to isolate in segregated regions, cut off from the rest of society, and relegated to a life of loneliness. These “leper colonies” were, for centuries, believed to be the only way to curb the spread of leprosy. Even now, in spite of leprosy being curable since the 1940s, these colonies live on.
It was actually in India’s first leprosy colony, Maharogi Sewa Samiti, in Dattapur, where our founders, Leah and Usha, first met. Developed in the mid 1930s, Maharogi, which literally translates as “mother of all diseases”, was intended to be a refuge for those with leprosy. A place where those who were outcast from society could live freely, shielded from the stigma and shame thrown at them by neighbours, and even families.
It was at Dattapur where Usha, after catching leprosy at the age of 8, received treatment from a WHO (World Health Organisation) consultant and highly-influential leprosy pathologist, Dr KV Desikan. He was the man who, after joining forces with Mahatma Gandhi and Dr.Sushila Naya (India’s Health Minister and Gandhi’s personal physician), created the first successful leprosy control program. Known as SET (Survey Education and Treatment), this was later adopted by the WHO as the method for eliminating leprosy, once and for all.
Time, and families, are lost to leprosy
But for millions, like Usha, so many years are still lost to leprosy. Leprosy steals time and, because of the stigma and lack of awareness, steals loved ones too. After moving to Dattapur, Usha witnessed total familial abandonment first hand; young women dropped off by their families, the doorway to coming home shut firmly in their faces. Some only had the earliest signs of the disease, with no deformities whatsoever, but because the stigma is so strong, the mere association with someone known to have it can lead to discrimination.
For women, there’s a double dose of discrimination. In Indian culture, it’s the wife’s duty to care for her husband, even if he has leprosy. Male sufferers have the safety net of a patriarchal society. Women however, are disposed into colonies like Dattapur by their husbands and in laws. The husbands are free to remarry and can even deny their first wives contact with their children, leading to many women developing severe mental damage as a result of the rejection. It's this kind of discrimination, at a physical and mental level, that makes leprosy such a vicious disease.
A stigma stronger than the disease itself
The saddest part is, leprosy’s greatest challenge is not the disease itself, it’s the stigma. Leprosy, contrary to assumptions, isn’t actually that contagious. You can’t catch it by touch, nor pass it down to children. It takes a while, living in close quarters to someone with leprosy, to actually catch it via nose and mouth droplets in the air. When treated, victims can lead normal lives in their communities. When untreated, it progresses from a light coloured or raised red patch on the skin, to a disease that attacks the nerves in your face, arms, hands, legs and feet. Left untreated, it can even stop you from blinking. Leprosy and poverty
Most of the cases that remain untreated are because of poverty. While training at The Gandhi Memorial Leprosy Foundation, Leah witnessed advanced cases, especially among the illiterate poor. Cases where ignorance and neglect had led to maggot ridden ulcers and nasal cavities, ulcerated eyes, infected holes in the soft palate, and a loss of fingers and toes. In the charity’s early days, many of the women we helped lived in vermin-infested areas, where an open, untreated wound was food for scurrying intruders in the night. In some cases, women had fallen asleep with their eyelids open and “Susundari”, a large shrew, nibbled the eye ball, causing blindness. Living as a woman with leprosy Inside their homes, they battled with the contamination of their wounds. Outside their homes, they had to acclimatise to social exclusion, daily distancing and sometimes outright abuse. Being a woman in India is hard enough, but being a woman with leprosy is even harder. While Usha was cured of her leprosy, she lost much of the elasticity in her face. She accepted her facial disfigurement, but she knew that society wouldn’t. So, following surgery, Usha healed her physical scars, but the memories of those denied the chance of living normal lives stayed with her, and when she finally met Leah, they resolved to do something about it.