The Neglected Tropical Disease

The tumour on Gajendra Sethi’s limb weighs 10-12 kgs. He can barely wear slipper on the left leg as the swelling, extending from knee till ankle, has completely deformed his heel and the foot. The 44-year-old noticed symptoms of filaria some 10 years back, which means the disease had already started spreading much before. Sethi is in the last stage of Lymphatic Filariasis which has no cure.

Only God can help my father. The medical science has already termed his case out of scope or recovery,” says his son.

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Most of the time Gajendra stays in the closure of his house, and at other times he is seen giving agriculture lessons to his children. His son, who was studying in ninth standard, had to leave education and work as a full-time employee in the paddy fields. The weather has been harsh on the production this year, so the son is trying to find a daily-wage job somewhere nearby the village.

While Gajendra “helplessly” watches his son struggle to earn two-day meal for the family, his wife’s only concern is how to segregate the meagre wage into two halves – for their daily bread and his required treatment. Passionate to get her husband rid of the disease, Gajendra’s wife invested all the money once saved for her daughter’s marriage and even mortgaged whatever little jewelleries she possessed.

“Doctors say that they can remove the tumour by surgery but involves a high risk. They have warned me that my condition can get worse after surgery. My only fear is that I may be bed-ridden for my life,” he says.

Out of the 34 patients in the Nandapur Village of East Puri, Gajendra’s condition is the worst. Not able to control his emotions, a teary-eyed Gajendra says:

It is not pleasant for any father to see his teenage son labour while his father lies on bed. It hurts me. I am living a worthless life. If I am gone, my family can at least live in peace and put the treatment cost in their use.

The disease has not just crippled Gajendra, it has made an impact on the emotional and financial structure of his family. Having invested a lot in the hospitals and losing faith in the belief system, he appeals for help. He wants to regain his ability to walk normally again. He wants to get rid of the frequent acute attacks tortured by painful limbs. Gajendra learnt lately that the disease had reached its peak and cannot be eradicated from his body, but he can definitely live a less painful life.

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After CASA volunteers introduced ‘foot-care management’ and five-year-course of prescribed medicines to villagers, Gajendra was free from acute fever attacks which he had been getting ever since filarial contraction. He only wishes had someone come to his rescue before, his son could have been a school pass-out and his wife donned those gold ornaments like any women of her age group.

My wife had been wearing 5 sarees for almost 5-6 years. My children do not demand anything from their father like other kids of their age because they know we have exhausted everything we had with us, a sobbing Gajendra says.

While the ‘enormous’ tumour will always remain a part of Gajendra’s life, there are other patients of the village who have learnt from his experiences and await help from becoming victims of a life-wrenching disease.