The Stories of Five Sweet Kids with Leprosy SARITA... SANTOSH... SHYAM... SANJAY... SONJOY

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1 The Stories of Five Sweet Kids with Leprosy SARITA... SANTOSH... SHYAM... SANJAY... SONJOY SARITA - Aged 10 years Happy little Sarita is now 10 years old. She got leprosy when she was just 8 years old. She is the youngest in her family and has 3 sisters and 2 brothers. No-one else in her family has leprosy... but she knows of other folk in her village - mostly older people - who do have leprosy. Sarita goes to the village primary school and is in Class 3. Sarita s leprosy started 2 years ago in an unusual way... none of the usual pale anaesthetic skin patches, but she noticed her arm was tender near her left elbow - just where the ulna nerve goes round the elbow ( the funny bone ) and she was experiencing some loss of sensation and movement in the fingers of her left hand. Being a left-hander was starting to find it difficult to write. She was too shy to tell even her friends at her school, but her mother, knowing about Lalgadh Hospital, brought her to Lalgadh Hospital for a check-up to see what was happening. After careful testing leprosy was diagnosed, and being diagnosed early and of the less-severe type of leprosy, she only needed six months of multidrug therapy. However, even while she was on multidrug treatment her ulna nerve just near her left elbow continued to enlarge and get more sore and tender, becoming like a rope about half a centimetre in diameter running down

2 the back of her arm, and a leprosy abscess, about the size of a bird s egg developed in the nerve sheath at her elbow. At the same time she progressively lost more sensation and feeling and movement in the fingers of her left hand, and her 4 th and 5 th fingers began to curl over (claw hand). Sarita was quickly admitted to Lalgadh Leprosy Hospital, where she has had two operations. The first was done on the 31 st August to remove the abscess on her ulna nerve, and decompress the nerve by splitting the nerve sheath a tricky operation even with good operating conditions and equipment (which we lack), as any slip can easily damage and paralyse the nerve. That went well, and she then underwent a second operation on 14th September reconstructive surgery on her left hand to transfer some tendons from her good fingers to the nonfunctioning tendons on her 4 th and 5 th fingers, to straighten out her claw hand and give her movement again in those little fingers. So this happy bright little girl is now waiting in Lalgadh Leprosy Hospital for another two weeks till we remove the plaster on her left arm and hand, to see how the operation went and to begin gentle physiotherapy as she learns to use those fingers again fingers that have new tendons that used to belong to her other fingers... something her happy brain will hopefully quickly re-learn. She is doing well as you can see from her big smile SANTOSH - Aged 10 Years Santosh is also just 10 years old, but he has already had leprosy for 5 years... imagine! Leprosy at 5 years old! Even though he completed his one year course of multidrug therapy four years ago, and so is officially cured (i.e. he is non-infectious ) for Santosh, the disease seems to go on and on. He is in trouble with his feet as the leprosy caused him to lose sensation in both his lower legs and feet, so he keeps getting worse and worse foot ulcers that he can t feel. He has already lost one toe from his right foot and two toes from his left foot.

3 Even so, he is a happy bright little boy with a big smile, coming from a poor family with 3 brothers. He is in Class 4 at school, and he knows of others in his village that have leprosy too. He is in Lalgadh Leprosy Hospital at the moment to get his foot-ulcers healed. Careful daily treatment in hospital is needed to heal his ulcers. He ll also have some fun...and some class lessons. When these are healed he needs specially moulded footwear made and measured especially for him, to protect those pressure points on his feet to help prevent further ulcers. He will have to be very very vigilant about his feet for the rest of his life if he is to avoid worsening ulcers, loss of more toes, and eventually an amputation SHYAM Aged 18 Years Shyam is 18 years old with a story rather similar to Santosh s story... but eight years further on. He first contracted leprosy when he was 10 years old. His leprosy started in the usual way with several pale anaesthetic skin patches on his arms and legs. Then he began to lose sensation in his lower legs and feet. Five years ago, because he could not feel his toes or the soles of his feet, he developed ulcers on both feet needing hospital treatment to heal properly. Since then he has been 7 times in Lalgadh Leprosy Hospital, each time to try to get his foot ulcers healed and prevent his feet from getting damaged any further. Shyam is from a poor family in a poor village, and has three brothers and sisters. His uncle was treated for leprosy. They have no land or animals themselves and both his parents get what income they can from as landless labourers on other peoples farms. There are other folks in his village with leprosy as well.

4 While he is in hospital he will get some loving compassionate care, his foot ulcers will get healed, and he will get another pair of specially measured moulded shoes and sandals to try to protect the pressure points on his feet, and prevent further ulceration. Like Santosh, Shyam will have to be so very careful about his feet throughout life, if he is to avoid further progressive ulceration and damage to his feet ending eventually in amputation SANJAY Aged 19 Years Sanjay is now 19 years old, and has been in Lalgadh Leprosy Hospital three times before. His leprosy began when he was about 9 years old, with multiple skin patches on his face, arms and legs. Although he has finished his one year multidrug therapy and is no longer infectious, the leprosy he had was a particularly active type and damaged nerves in his face, his arms and hands and his legs and feet. This damage is irreversible and means that for him, the effects of leprosy continue and unless he is very careful, worsen. Already affected, his eyelids won t close properly which makes him vulnerable to blindness; his hands have lost some sensation and movement and his fingers became clawed, and this has been successfully managed with reconstructive surgery on both hands last year. He developed a foot drop on his left side and reconstructive surgery has successfully transferred a muscle tendon from the back of his leg to the front, to help keep his foot from drooping. And on this occasion he is in hospital to try to heal those ever dangerous ulcers that he cannot feel on the soles of his feet. Despite all these ravages of leprosy, and a possibly bleak future of disability ahead, he is a cheerful young guy, has fun with the staff and cheers up the other patients. Once his ulcers are healed he will also get specially made sandals and shoes to help keep him from putting pressure on the weaker ulcer-prone areas of his feet.

5 SONJOY Aged 17 Years Sonjoy has just turned 17 years old, and has had leprosy for 2 years now. He is on an extended 2-year course of multidrug therapy because of the severity of his leprosy. Although he has not suffered nerve damage or loss of sensation to his eyes or his hands or his feet, he experienced the most active form of leprosy in which he developed nodules and diffuse infiltration all over his body arms, legs, face. He also then developed what is called Type 2 Reaction reaction one of the little understood awful consequences of leprosy and potentially fatal. This meant further painful nodules erupting under the skin, jaundice, high temperatures, and very ill. Apart from his multidrug treatment, his Type 2 reaction has required very high doses of steroids prednisolone and this has lead to several side effects for poor Sonjoy, including his puffy moon-face. He was very sick indeed for some weeks but is now slowly recovering and the level of his steroid medication is slowly being reduced. He is a poor little guy who has already been through a lot and needs lots of prayer support Dr Graeme A. Clugston & Meena Clugston, Medical Director, & Nursing Adviser Lalgadh Leprosy Hospital & Services Centre Dhanusha District, Nepal