U. Kyaw Myuu 48, is a farmer who now lives as a tenant on a farm outside Shwebo with his wife Ma San. They both work in the fields, picking rice. This is sad change in their circumstances from a time when their family owned property in the town of Shwebo and farmed their own land. It all changed for Kyaw when he had leprosy. Since that time his family has been saddened to have had three brothers affected by leprosy and one die of cancer. Their mother, who passed away six months ago, also had leprosy.
Kyaw was only 12 years old when a medical screening programme visited his school and a health care worker noticed white patches on his arms and referred him to a hospital in Mandalay. We journeyed from Mandalay yesterday in a new vehicle on improved roads and the bumpy, dusty, journey still took over three hours. The overcrowded bus that took him and his uncle to the hospital would have been painfully slow. The treatment he then received upon confirmation of leprosy was also slow to work as it predated multidrug therapy (MDT) and was sulphur-based. Consequently his hands started to claw and numbness set in and after the age of 18 he was unable to either work or continue his studies. This was a bitter blow to a man, who, having spent time speaking with him today, clearly possesses a keenly intelligent and analytic mind.
What makes Kyaw’s story stand out for me is that he took it upon himself to straighten out his own clawed fingers. Devising temporary bamboo splints that he applied only at night so that none of the other villagers would see, he managed to counteract the clawing after only three months. He also faithfully followed all advice from the doctors and physiotherapists and diligently tended to his ulcers, secondary reaction to drugs and problems through self-care. This process still meant that for nearly 20 years he was unable to work regularly or earn a living and with the added burden to his family of having three brothers with leprosy, a mother who had leprosy, and a father who died of a heart attack, they were unable to keep their land, status and livelihoods.
However, he is not bitter. He has been married since the age of 19 and his wife is still dearly devoted to him. Their two daughters aged 22 and 24 are both at University studying for Law Degrees and he acts as a local advocate, encouraging people affected by leprosy not to lose heart, to take their medicines and practice self-care. Kyaw said: “When I was a child and my mother had leprosy, a local man, who had also been diagnosed with the disease drank pesticide and killed himself after hearing of the diagnosis. When I had the news that I had leprosy I decided I would instead drink the medicine I was given and do everything I could to get better and do the positive things. I still do.”