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Video | Fighting Filaria: How UP Villages Are Battling Stigma, Surviving Odds

Ground Report | Patients of lymphatic filariasis in UP share stories of disease, discrimination and desperation.

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Video Editor: Abhishek Sharma

Illustrations: Vibhushita Singh

Lymphatic filariasis, Filaria, Elephantitis, or haathi paon is a parasitic disease that causes high fever followed by disproportionate enlargement of an arm, leg, or genitalia.

Patients of filaria are often ostracised, stigmatised, and forced to suffer in silence.

In India, filaria has been reported in 339 districts across 20 states and union territories putting 740 million people at risk. Uttar Pradesh alone contributes to 8 percent of cases in the world. 

FIT travels to 3 villages – Hathigaon, Hatherua, and Bhinnaur – in Kanpur District to meet some of these patients to know their stories and what the situation is really like on the ground.

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Stigma, Taboo and Discrimination

Uma Shukla, a resident of Hathigaon, Sarsaul, and a member of the Filaria Network in the area, says her in-law's family would often say, "All your relatives on your parents' side of the family had this illness and now you've brought it to our household."

"No one touches us. Even now at the workplace, they steer clear of us. They say, 'Stay away from her, she had filaria'."
Uma Shukla

Ram Lakhan Dwivedi, a 36 year old milkman, says filaria led to his marriage falling apart.

"Since the lockdown, the swelling in my leg has been increasing steadily and hasn't gone down since," he says, adding, "Because of this, my wife left me and I had to get a divorce."

"People laugh at me and talk about it. I don't go to any family functions."
Ram Lakhan Dwivedi

Quacks and Miracle Workers: When Patients Get Desperate for A Cure

Many patients of filaria, out of desperation and despair, seek out miracle healers and quacks to help cure their symptoms. Uma and Ram Lakhan talk about the extent to which many go to rid themselves of the illness.

"Some people told me to massage my leg with a mix of snake venom and hot oil. I did it, but I didn't get any relief," she tells FIT.

After that, she adds, "I tried getting it (the leg) bitten by a black scorpion. My leg was so numb by then, I felt nothing."

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Ram Lakhan, on the other hand, says he has tried several local treatments and herbs, including sitting for hours with his leg buried in a hole in the ground, covered in a paste of cow dung.

"I would have spent around Rs 1 lakh trying to treat this. But to no avail," adds Ram Lakhan.

Lymphatic Filariasis: Symptoms, Treatment & Prevention

The symptoms of filaria cannot be reversed with treatment, but it can be kept from escalating and spreading with the help of preventive treatment.

These include a combination of the antiparasitic drugs Diethylcarbamazine (DEC), Albendazole, and Ivermectin.

The incubation period for filaria can last between 5 to 10 years, so you could have the parasite and not even know it till much later. 

This is why healthcare officials insist that those living in filaria-prone areas must take preventive treatment regularly even if they don’t have any symptoms.

Once you do develop symptoms, they can be kept under control with:

  • Regular exercise and movement to improve circulation

  • Good hygiene practices

  • Timely medication

Finding Communities Through Patient Networks

Local healthcare workers and patients in these villages have created networks that double as support groups.

At the network meetings that is conducted once a month, members are given proper information, the medication they need, and a platform to talk about their problems.

"Earlier when the ASHA workers brought us the preventive medication, we would throw them away. Since I've joined the network I've understood their importance. I take the medication regularly, and do all the exercises they tell me," says Uma.

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Topics:  Video   Kanpur   Healthcare in India 

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