On Monday I spent the day with Maggie and Rabi at Khokana leprosy colony. It was an eye-opening and very moving experience and I fear that I will not be able to find the words to express it.
I should probably say a few words first about leprosy itself. Although I'd known of the disease for years, it was only in preparing to come to Nepal that I really learnt anything about it. I'm not good with the medical side of things. It's a bacterial infection which is contagious but only after prolonged contact in a small, unsanitary spaces and only if you're already malnourished, ill or otherwise feeling the effects of poverty (in other words, there's no way that I could contract it from a day visit to Khokana). Although contagious, it is not highly infectious and about 95% of people are thought to be immune. It is absolutely not hereditory (which makes the fact that until 1996, male LAPs in Japan were forcibly sterelised even more barbaric). For those unlucky enough to contract the disease, symptoms include skin legions, collapsed noses, nerve damage, shrivelled hands and feet and inablity to shut ones eyes which leads to blindness. Because of the nerve damage, leprosy affected persons (LAPs) cannout feel any pain. As a result they often don't notice that they have vut or burnt themselves (which frequently happens when they have to walk over rough ground or cook for themselves, which their poverty demands) and as a result they suffer terrible infections which result in amputations.
As if the physical symptoms weren't bad enough, leprory carries a huge social stigma. Originally thought to be a curse from the gods, LAPs were thrown out of their families and placed in colonies. Khokana, for example, was set up sometime during the 1860s or 70s at a time when having leprosy was actually illegal.
Although not preventable, leprosy is totally curable and, if caught early enough, all physical deformities can be avoided. The cure is in the form of multi-drug therapy and the pills are made available by their manufacturer free of cost in all endemic counties.
As a result, all the LAPs at Khokana are technically cured of leprosy, in as much as they are no longer affected by the bacteria. But one look at them and it's plain to see that they still suffer greatly from complications of the disease. (The pills only halt progess; they don't reduce the physical deformaties). Unfortunately, at this point the WHO wipes their hands of the LAPs, claiming they are cured. Maggie knows better and is currently campaining for a new disease classification, post leprosy syndrome, which would at least give the people at Khokana and other such places an umbrella under which they could receive more support.
As if the physical symptoms weren't bad enough, leprory carries a huge social stigma. Originally thought to be a curse from the gods, LAPs were thrown out of their families and placed in colonies. Khokana, for example, was set up sometime during the 1860s or 70s at a time when having leprosy was actually illegal.
Although not preventable, leprosy is totally curable and, if caught early enough, all physical deformities can be avoided. The cure is in the form of multi-drug therapy and the pills are made available by their manufacturer free of cost in all endemic counties.
As a result, all the LAPs at Khokana are technically cured of leprosy, in as much as they are no longer affected by the bacteria. But one look at them and it's plain to see that they still suffer greatly from complications of the disease. (The pills only halt progess; they don't reduce the physical deformaties). Unfortunately, at this point the WHO wipes their hands of the LAPs, claiming they are cured. Maggie knows better and is currently campaining for a new disease classification, post leprosy syndrome, which would at least give the people at Khokana and other such places an umbrella under which they could receive more support.
To keep the LAPs out of sight, Khokana was set up in the middle of nowhere. Even now, it's difficult to get there; though it's not that far from Kathmandu, the last stretch is several kilometres down a steep dirt road that requires a four-wheel drive. The countryside around there is quite lovely. The view from the distance does little to prepare one for what they'll see up close.
On arrival, Maggie showed me around the colony. I'm not sure what I was expecting but it wasn't what I saw. The colony is far more like a village than I'd imagined (minus anything commercial). The LAPs living there are given a monthly allowance of rice and a small amount of money and then are essentially left to get on with it. That surprised me. I was shocked to hear an extremely disfigured old man with no fingers talk about how he cooks for himself. One woman, who could barely walk and was having serious trouble breathing was out gathering vegetables. There's definitely a communal atmosphere there and some unexpected showing of humanity; one badly affected woman has even adopted a baby. Maggie was quick to point out what she described, quite rightly, as the medieval living conditions. The outhouses were particularly primitive, not to mention totally lacking in privacy. The residents of the oldest building (see photo below) have one room each, maybe about 2m by 4m. Those on the second floor have to navigate a staircase that's hard enough for someone with full use of their limbs - quite how the LAPs handle it is beyond me.
Before I came to Nepal I went to a lecture that Maggie gave in London about leprosy. It was to a class of students of tropical medicine, so in part was quite technical but she also included dozens of photos of leprosy affected people (LAPs). I therefore knew what to expect in terms of the physical deformation of LAPs so perhaps wasn't quite as shocked by the residents themselves as I might have been. Below is a photo of one guy who's been living in the colony for over 50 years. I'm embarrassed to say I've forgotten his name. Note the collapsed face, damaged eyes and deformed hands.
One resident died whilst I was there. It was my first sight of a dead body and, needless to say, it was a chilling experience.
Here's the unfortunate tale of one now elderly resident. Decades ago, her aunt contracted leprosy and was sent to Khokana. On realising that the colony allowed a small provision of food as well as shelter, the aunt contacted her sister, who was very poor and could not afford to look after all her children. The aunt suggested that one of the kids was sent to live with her in the colony. The sister agreed and a girl was sent. The child contracted leprosy and has been there ever since.
It wasn't all bad. As one would expect when a group of men and women are segregated from society, many have formed relationships, married and had children. As noted above, leprosy is not contagious. There was one particularly adorable child there, just over a year old, the grandson of two long-term residents. Both the grandparents are leprosy affected. Their daughter (the mother of the boy) is perfectly helpful and absolutely delightful. She is now a nurse at the colony, having risen above her rather inauspicious start.
There's an interesting religious mix at Khokana. As is the case throughout Nepali society, there are both Buddhists and Hindus there. But because of missionary involvement, there are also a number of Christians. For the 250 or so residents, there is therefore a temple, a stupa and a church. They all seem to live in harmony. The most notable difference between them is that for some reason that I can't explain, the Christians keep their rooms and environs much cleaner and tidier than their Hindu or Buddhist counterparts.
It was extremely difficult to be there, witness the hardship and feel so incapable of helping. I've never been more thankful for my health and the extraordinary comfort that I've enjoyed throughout my life than when I was at Khokana.
Before I came to Nepal I went to a lecture that Maggie gave in London about leprosy. It was to a class of students of tropical medicine, so in part was quite technical but she also included dozens of photos of leprosy affected people (LAPs). I therefore knew what to expect in terms of the physical deformation of LAPs so perhaps wasn't quite as shocked by the residents themselves as I might have been. Below is a photo of one guy who's been living in the colony for over 50 years. I'm embarrassed to say I've forgotten his name. Note the collapsed face, damaged eyes and deformed hands.
One resident died whilst I was there. It was my first sight of a dead body and, needless to say, it was a chilling experience.Here's the unfortunate tale of one now elderly resident. Decades ago, her aunt contracted leprosy and was sent to Khokana. On realising that the colony allowed a small provision of food as well as shelter, the aunt contacted her sister, who was very poor and could not afford to look after all her children. The aunt suggested that one of the kids was sent to live with her in the colony. The sister agreed and a girl was sent. The child contracted leprosy and has been there ever since.
It wasn't all bad. As one would expect when a group of men and women are segregated from society, many have formed relationships, married and had children. As noted above, leprosy is not contagious. There was one particularly adorable child there, just over a year old, the grandson of two long-term residents. Both the grandparents are leprosy affected. Their daughter (the mother of the boy) is perfectly helpful and absolutely delightful. She is now a nurse at the colony, having risen above her rather inauspicious start.
There's an interesting religious mix at Khokana. As is the case throughout Nepali society, there are both Buddhists and Hindus there. But because of missionary involvement, there are also a number of Christians. For the 250 or so residents, there is therefore a temple, a stupa and a church. They all seem to live in harmony. The most notable difference between them is that for some reason that I can't explain, the Christians keep their rooms and environs much cleaner and tidier than their Hindu or Buddhist counterparts.
It was extremely difficult to be there, witness the hardship and feel so incapable of helping. I've never been more thankful for my health and the extraordinary comfort that I've enjoyed throughout my life than when I was at Khokana.
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