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This small family lives in painful isolation

Divya Ramamurthi

SHIMOGA: Siddappa sits in the red clay verandah of his house with his wife, Nanjamma, and their neighbour, Nagamma, and stares blankly at the mud road in front. He and the two women glance at a few cars that pass on their way to Sagar town. There are about 20 bullock carts on the road, and Siddappa and the others wave to people travelling in them.

Once in a while, Siddappa (35) hitches up his "lungi" and adjusts its folds. He looks at the ground and, with his toes, squiggle circles on the sand. When they no longer have anything to talk about, they wait and hope that someone will stop and speak to them. "It is boring to sit inside the house. That is the only reason we come out and sit here," Nanjamma says.

The Siddappas, who live in Handigodu, are among the 35 families in the village who have been affected by the "Handigodu syndrome," a rare and painful osteoarthritis disorder detected only in Karnataka. Those affected cannot walk, and their knee joints and wrists are bent.

The crippling disorder made headlines 30 years ago as a "rare and mysterious disease." Teams of researchers and mediapersons came to the village to meet those affected, tell the world about their disorder and help them find a cure. But nothing came out of it.

Siddappa explains that it is difficult for him to take even a few steps. He says he has to hold on to his wife's arm for support to reach the verandah from inside the house. It takes him more than five minutes. "My knees hurt every time I take a step. Crossing the threshold of my house is a big hurdle," he says.

It is not going to get any easier for them. Nanjamma, who is herself frail, says her legs are growing weaker. "I do not know how much longer I can support him and help him walk," she says.

Over 500 people, particularly members of the Chanangi and Chaluvadi communities in Shimoga and Chikmagalur districts, are affected by the Handigodu syndrome.

Since they developed it in their early 20s, Siddappa and Nanjamma have never been employed and they depend on a monthly allowance of Rs. 150 given by the Government to each affected person. Rice porridge is the only food item they prepare. The children have lunch at a hostel run by the Government for the minor dependents of people afflicted with the Handigodu syndrome. "Thankfully, they get one decent meal a day," Nanjamma says.

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