LEPERS, MESSIAHS - PART 3

Can You Believe This Disease Still Exists?

BY CONOR CREIGHTON, PHOTOS BY STEVE RYAN


Leprosy is very easily cured. A six-month multidrug program flushes the bacteria out of your system for life. It’s an incredibly harsh combination. The side effects include hepatitis, psychosis, a violent reaction in which the skin peels off, and diarrhea so bad that the patient has to literally sleep in a bedpan for a few days. But hey, you won’t be leprous any longer when it’s over. If taken in time, someone with leprosy can escape the physical deformities associated with the disease. The reason it often isn’t taken early is because the stigma of leprosy is so bad that people prefer to cover it up rather than go to a hospital and get cured. In Nepal, if someone in your family has had leprosy—even your grandparents—the chances of you getting married or even landing a job are greatly reduced. It’s like having an uncle who went nuts and shot up the post office. People just assume the fruit can’t have fallen that far from the tree. A large part of the stigma is attributable to the hospitals themselves. Lalgadh wouldn’t be so busy if it weren’t for the fact that doctors and nurses from every other hospital in southern Nepal turn away anyone who displays even the early symptoms of leprosy.

Leprosy is only mildly contagious, and it only affects people with very low immune systems. The chances of a healthy Nepalese person catching leprosy are remote; the chances of a Western person catching it are about as likely as a piano dropping from the sky on top of your head. The United States has new cases of leprosy every year, but all of these are from recently arrived African or South American immigrants. Your average picket-fence, Applebee’s American family has nothing to fear from leprosy. But in the remote countryside of Nepal, where subsistence agriculture is the norm, malnourishment is common, and the only certainty is the daily blackout, maintaining a strong immune system and avoiding disease is not easy.


The hospital’s head caregiver is Dr. Krishna. He was born in a leper colony to parents who both had leprosy. His mother had deformed claw hands and one leg. His grandparents had leprosy too. “I think that’s why my resistance is so strong,” he says and then adds jokingly, “But I still check my arms for spots every now and then.”

“It was really hard growing up,” he says. “My father had no deformities and he worked and my mother was on her own raising the family. Other children called me a leper in the streets.” Krishna is living proof of how international aid can work. A Swiss and a Dutch charity helped put him through school, before Nepal Leprosy Trust took him on and sent him for training as a doctor. The hospital’s lab technician is also a son of leprosy, as are all of the nurses. They work for half the salary they would get in one of the state hospitals. If everyone gets paid, even if it’s only half of what they should be getting, it’s been a good month. As well as not being able to cover staff wages, they don’t always have bandages, plastic gloves, or fishing wire for sewing flesh back together. In spite of this, the level of care they extend to the patients at the hospital can lead one to believe the staff were employed by an exclusive clinic, somewhere the rich and the idle might go to dry out for a couple of weeks.

The World Health Organization has called leprosy a neglected disease. Money that might ordinarily have gone into funding the hospital, finding a leprosy vaccine, starting stigma-elimination courses, or helping rehabilitate the 2 million leprosy sufferers in the world is being siphoned elsewhere.

Cancer has Bill Gates, AIDS has Bono, and orphans have Angelina Jolie and Madonna snapping them up like handbags on sale, but leprosy has no visible public supporters. The WHO has a “Final Push” strategy for leprosy elimination with self-diagnosis and multidrug therapy at its core. The last big disease that science managed to eradicate was smallpox. That was nearly three decades ago. Ridding the world of leprosy would be a major boon for an organization that’s been slacking off like French truck drivers for way too long. There is a sense of urgency among experts that now is the time to act, before the disease mutates or becomes resistant to the multidrug therapy. When asked if he can imagine the end of leprosy in his lifetime, Dr. Krishna smiles. “Leprosy is a mystery,” he says. “It’s always been a mystery. In my lifetime, I don’t know. In my children’s, maybe yes.”


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