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In search of an elusive cure

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No end to the pain: Siddappa, his wife, Nanjamma and Nagamma, who suffer from Handigodu Syndrome at the village.
No end to the pain: Siddappa, his wife, Nanjamma and Nagamma, who suffer from Handigodu Syndrome at the village.

PRAMOD MELLEGATTI

Handigodu Syndrome, a painful and crippling affliction affecting a particular section of society in the villages around Shimoga and Chikmagalur, still evades understanding by medical experts.

Seethamma had no inkling that the Chief Minister would stay in her old house. The mother of two sons and a daughter, Seethamma works as a maidservant.

It was her responsibility to prepare the dinner to be served to the Chief Minister. Everything else, from giving a facelift to the house to the installation of the basic facilities, was taken care of by the district administration.

It was no easy task for Seethamma either to decide the menu, which was left to her discretion. Finally she decided to prepare the koli kajjaya, a famous non-vegetarian dish in the Malnad region. In addition, she decided to serve the holige, kadabu, rice and sambar to the Chief Minister.

However, after the visit, the temporary facilities installed at her place have been taken away. And Seethamma, who seemed to forget her pain in her enthusiasm to play host to the Chief Minister, is back to her routine work to sustain herself and her family. She apparently enjoyed the special status in the village although it proved to be shortlived.

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Seethamma, a 52-year-old dalit widow, is one of the victims of a mysterious disease widely prevalent at Handigodu, a small village in Sagar taluk of Shimoga district, Karnataka.

She has been suffering acute body pain for over 10 years, with no relief in sight. “There seems to be no end to my suffering. But I am constrained to work despite acute pain as I have to support my family,” Seethamma says with a sense of resignation. The peculiar disease also afflicts nearly 4o families in her village.

In the limelight

Seethamma found herself in the limelight all of a sudden when she was asked to play host to the Chief Minister H.D. Kumaraswamy during his overnight stay at her village on May 17. Her tiny house became a beehive of activity with the district administration making it ready for the VVIP’s stay. The main intention of Kumaraswamy’s visit to Handigodu was to get first-hand information of the rare disease as no lasting remedy has been found yet.

The disease, known as Handigodu Syndrome, has baffled medical experts who remain clueless about its causes. The first known case was detected in 1975 by a social worker, Chandrasekhar Bhat. Since then, cases have been continually reported.

The disease is prevalent in parts of Shimoga and Chikmagalur districts with more than 900 persons, mainly belonging to the Chalawadi and Chennangi communities which are scheduled castes, being affected so far.

Crippling

Considered as an orthopaedic disease, it causes a severe joint pain in the waist, the limbs and hips and as it progresses it renders the patient totally or partially crippled. There are patients who crawl, being unable to stand on their legs. In extreme cases the patient is even unable to sit to answer the call of nature.

The degree of deformity differs from one patient to another and what is distressing is that the number of the patients becoming dwarfs is increasing. The disease becomes noticeable only after a person becomes eight years old and it is found to be affecting men more.

Many of the patients have remained unmarried because of the scourge afflicting them. Even mere sustenance has become difficult. A majority of them are farm workers. As they have nothing to fall back on, they are forced to work despite the crippling pain.

The Indian Council of Medical Research (ICMR) conducted research on the causative factors of the disease between 1986 and 1988. It took up the second phase of the research between 2000 and 2005 but it has not yet submitted its report. According to the ICMR, there are 508 reported cases of the Handigodu Syndrome in Shimoga district alone.

Sudies and surveys were conducted by several research institutes to find out the causative factors of the disease but nothing has been proved conclusively though it is widely accepted that the problem is genetic.

The National Institute of Nutrition of Hyderabad conducted research on aspects such as nutrition and water samples besides conducting epidemicological and environmental surveys, metabolic and endocrine evaluation surveys, genetic and bio-medical studies. But it could not prove anything except suspecting that it was a genetic problem.

It was followed by a visit of experts from the NIMHANS, Bangalore which suspected it to be an orthopaedic problem. Another team of experts from the Sanjay Gandhi Post Graduate Medical Institute of Lucknow, headed by Dr. Agarwal, confirmed that it was a genetic problem and felt that rehabilitation of the affected persons was the only solution.

Measures implemented

A House Committee headed by the MLA N. Jyothi Reddy was set up in 1997 to study the social problems of the patients. It suggested several measures for the rehabilitation of the patients after visiting some of the affected villages. Some of the suggestions which have been implemented include the sanction of a pension to each person rendered disabled by the disease, pressing into service a mobile hospital with an orthopaedic expert, taking the items of the public distribution system to the door step of the patients, arranging for orthopaedic surgeries in extreme cases, starting a residential school at Handigodu for children below seven years assuring them nutritious food and the opening of a separate ward at the General Hospital in Sagar town for the patients.

A handloom cooperative society was set up at Handigodu by the government for the rehabilitation of the patients. It is being managed by the patients themselves. But the society is severely handicapped as no technician has been posted so far to offer technical guidance despite the recommendation made by the House Committee. This has made it difficult for the society to maintain the quality of its products and push them in the market.

Highlighting a need

The overnight stay by the Chief Minister in the house of Seethamma may not have brought about a solution to the problem but it has at least brought into focus once again the seriousness and the need to initiate measures to prevent its occurrence.

Future directions

Mr. Kumaraswamy, who was visibly moved by the pathetic condition of the patients, said he was convinced about the need to put an end to the disease. He promised to convene a meeting in Bangalore of medical experts, including practitioners of various Indian medicinal systems, to tackle the problem from different angles.

Seethamma, however, is not in a position to appreciate the importance of the Chief Minister’s stay at her house even after the dust raised by the bustling activities during his stay has settled. She says, “everybody in the village says that Handigodu has benefited from the visit by the Chief Minister. But what is the use when it does not bring a solution to our suffering,” she asks.


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