Turning Pain into Purpose: Survivors Empower Villages to Overcome Lymphatic Filariasis
Lymphatic filariasis, a much misunderstood and widespread tropical disease is finally coming under control thanks to the efforts of past victims of the illness who are spreading awareness in their communities
Imagine waking up one day to excruciating pain in your leg and finding the limb has swollen to three times its size. There is no school textbook, family member or prayer that has ever prepared you for such a moment in your life. With no knowledge about what caused the unsightly swelling, you spend the next 40 years of your life searching for a cure, or for that matter relief of any kind. This was the life of Ram Sanehi since the age of 25 when he first contracted lymphatic filariasis (LF), a parasitic infection that causes severe limb swelling, pain, and long-term disability.
With no idea what was happening to him or what to do about it, Sanehi, now 65, spent years with a disfigured leg. The disability limited his business as a shop owner and he worried constantly about mounting financial bills for him and his two small children. At one point, desperation got the better of him. After visiting a series of herbalists, exorcists, quack doctors and vaidyas, Sanehi resorted to a barbaric ritual in the wild hope that it would heal his leg.
On the advice of a seer near his village of Kalyanpur in Kanpur, Uttar Pradesh, Sanehi would dig a three-foot pit every morning and fill it with cow dung and wood. After setting the pit alight, he would put his infected foot into the heat for hours. He performed the ‘treatment’ for six long months. The ritual only worsened his condition to the extent where he struggled to walk.
All that changed when Sanehi came across a patient support group for lymphatic filariasis through the local healthcare centre. There he was taught simple methods to manage his disability—a thorough medical-level washing of the affected leg and physiotherapy.
“Once I learnt that filariasis, while incurable, is manageable, I began exercising and practising the morbidity management and disability prevention (MMDP) protocols, which allowed me to receive free home-care kits and community support to manage...
Imagine waking up one day to excruciating pain in your leg and finding the limb has swollen to three times its size. There is no school textbook, family member or prayer that has ever prepared you for such a moment in your life. With no knowledge about what caused the unsightly swelling, you spend the next 40 years of your life searching for a cure, or for that matter relief of any kind. This was the life of Ram Sanehi since the age of 25 when he first contracted lymphatic filariasis (LF), a parasitic infection that causes severe limb swelling, pain, and long-term disability.
With no idea what was happening to him or what to do about it, Sanehi, now 65, spent years with a disfigured leg. The disability limited his business as a shop owner and he worried constantly about mounting financial bills for him and his two small children. At one point, desperation got the better of him. After visiting a series of herbalists, exorcists, quack doctors and vaidyas, Sanehi resorted to a barbaric ritual in the wild hope that it would heal his leg.
On the advice of a seer near his village of Kalyanpur in Kanpur, Uttar Pradesh, Sanehi would dig a three-foot pit every morning and fill it with cow dung and wood. After setting the pit alight, he would put his infected foot into the heat for hours. He performed the ‘treatment’ for six long months. The ritual only worsened his condition to the extent where he struggled to walk.
All that changed when Sanehi came across a patient support group for lymphatic filariasis through the local healthcare centre. There he was taught simple methods to manage his disability—a thorough medical-level washing of the affected leg and physiotherapy.
“Once I learnt that filariasis, while incurable, is manageable, I began exercising and practising the morbidity management and disability prevention (MMDP) protocols, which allowed me to receive free home-care kits and community support to manage my condition. My leg swelling is now less than a quarter of what it was,” says Sanehi.
The path to safe and effective treatment also led him to other patients with similar experiences. Their interactions made one thing clear: just like them, thousands were ignorant about the right way to prevent and tackle this disease. Now they could do something about it.
Living in the Dark
Endemic to poorer parts of the country where myths and misinformation remain strong, filariasis is still believed to be caused by generational curses, moral failure or caste, instead of the real reason: parasitic roundworms carried by infected mosquitoes. The larvae of the worm is deposited onto human skin when the mosquito bites, and over time they enter the skin and migrate to the lymphatic vessels where they develop into adults. The initial infection is usually asymptomatic and one can live with the worm for years before visible symptoms emerge. Over time though, the damage done to the lymphatic system begins to show through swelling in areas where lymph nodes are found.
The disease is also tricky to diagnose. “The larval worms are nocturnal and can only be detected through microscopic examination of blood samples taken at night. This is why cases are missed—the timing of the tests has to be correct,” explains Dr N. K. Ganguly, former chairman of the Indian Council of Medical Research and an expert in NTDs. Little wonder then that LF remains prevalent in 345 districts across 20 states and UTs in India, affecting an estimated 31 million people—around 40 per cent of the global LF burden.
The WHO recognises LF as a neglected tropical disease (NTD) and a global health priority. The latest data from 2023 shows that 6,19,000 cases of LF-related lymphoedema (swelling from fluid buildup due to blocked lymph vessels) and 1,27,000 hydrocele (swelling in the scrotum) cases were reported nationwide across endemic districts. Eight states—Uttar Pradesh, Bihar, Jharkhand, West Bengal, Chhattisgarh, Maharashtra, Odisha, and Madhya Pradesh—account for approximately 90 per cent of the LF burden.
“The disease occurs in geographical pockets and so locals believe the condition is genetic or hereditary, not realizing it is the same infected strain of mosquitos biting them all,” adds Dr Ganguly, who has become an active ambassador for the government’s Mass Drug Administration (MDA) and MMDP rollout, a two-pronged approach that aims to eliminate lymphatic filariasis by 2027.
Spearheaded by the Ministry of Health and Family Welfare and the National Centre for Vector Borne Diseases Control, the programme has adopted a people-first approach where local participation, community ownership and awareness at the grassroots level is yielding remarkable results already. These interventions are currently being implemented across all the high-burden states.
Shedding Light
“Once stigmatized because of the disease, I now proudly share my experiences and knowledge to help prevent it. I went through a lot due to a lack of information, and I do not want others to suffer my fate,” adds Sanehi, who has taken up the task of educating others about the cause and management of LF.
He is not the only one to feel this way. Karan Singh, now a 24-year-old student in college, is equally motivated to help reduce stigma and spread of LF in his community. The only son of a farmer in Shahpur village in Barabanki, Singh happily helped his father farm until at age 13 they both developed the tell-tale leg swelling. When a sudden and severe pain landed Singh in the hospital, it was discovered he had a kidney infection as well as filariasis, which eventually spread to both legs. “My life was nothing but pain till I enrolled in the patient stakeholder platform,” he says.
It is voices like his that is helping healthcare workers convince villagers in endemic areas to take preventive medicine. So strong has been local participation that, as of February this year, 111 Ayushman Aarogya Mandirs in UP and Bihar converted 20,009 of 21,279 (94 per cent) people who had previously refused to consume preventative medicines.
The impact of these efforts is already visible. In 2025, 138 of the 339 endemic districts have successfully cleared the first Transmission Assessment Survey, indicating a significant interruption in disease transmission. Six states/UTs (Goa, Puducherry, Dadra & Nagar Haveli & Daman & Diu, Tamil Nadu, Lakshadweep, Andaman & Nicobar) have seen a transmission rate of less than one.
Finding a Purpose
Moreover, the patient support groups have resulted in something even more powerful than the reduction in LF transmission rates. They have given new life and hope to those who have spent much of their lives trying to survive the disease. 76-year-old Jasiya Devi from Kharhas village near the Muzaffarpur district recalls a life of quack treatments that solved nothing but strained her finances. Her husband, Gunu Ram, a rickshaw driver, died suddenly, leaving her with two small children to care for. Despite the pain in her leg, she managed to educate and see her children married. The family her daughter married into put her in touch with a support group for LF. Armed with the knowledge they offered, she identified and asissted 10 other filariasis patients in Kharhar. But Jasiya didn’t stop there. She went on to help them access hospital examinations, medications, MMDP kits, and disability certificates.
As a result of Jasiya’s efforts, filaria patients no longer face neglect from local healthcare professionals. Together, th group conducted awareness programmes at local Anganwadi centres, schools, and ration shops to promote the consumption of preventive medicines. Teaming up with ASHA workers, they conducted house-to-house visits to administer medication. Today, Jasiya is once again involved in setting up a patient support group in another village, encouraged by how her actions were giving pain relief and hope to so many.
Like Jasiya, 40-year-old Renu Singh from Binour village, Kalyanpur block, Kanpur Nagar is also relentless in her goal to ensure dignity for filaria patients. “I battled filaria for about four years. After I joined the patient support group, I learnt about the disease and got opportunities to connect with others. I was even invited to a district-level meeting at the Kanpur CMO office on Women’s Day, where I received a certificate recognizing my contributions. Working with the welfare organization also raised my self-confidence, transforming me from a homemaker to a woman capable of making a difference, and helping me better care for my family,” she says.
Not too long ago, these victims of filariasis never thought they would ever be able to run up a flight of stairs, gain respect from their peers or find empathy from their communities. Today, they are people who walk with purpose and conviction instead of looking down upon their bodies to find pain and horror. Transformed, they are determined to offer the same fate for others.