Mental Health Challenges Abound for Lymphatic Filariasis Patients in India

India aims to eliminate Lymphatic Filariasis by 2027 amid challenges.

Bramhagiri, Orisha: Fifty-year-old Bishnupriya Swain, a resident of Bramhagiri village in Puri district, Odisha, begins her day by mobilising village women who are suffering from Lymphatic Filariasis (LF) via a WhatsApp group, asking them to gather at a designated place. She does this most Sunday mornings.  

Swain tells Health on Air about how, since her childhood, her mother Kesari Swain, 82, has been a victim of domestic violence and how her father called her ‘Godari’, a disrespectful name used for LF patients in Odisha and Bengal.

Kesari Swain has lived with LF for 64 years now. It was after her marriage with Udayan Swain, at the age of 18, that the symptoms of the disease — fever, blood clots in the legs — gradually appeared.

Initially, the symptoms would appear once every fortnight, and she would be bedridden for three to four days. Over time, her legs got swollen. Besides the pain, the superstition attached to the disease made her life tough. People, mostly in rural areas, believe that LF happens to a person due to ‘evil eye’, and such people are often socially excluded.

Kesari’s daughter Bishnupriya Swain, who works with the Regional Centre for Development Corporation (RCDC), is now on a mission to create awareness among women through community involvement in the rural areas of Puri district at various levels – health, climate change, economy, education, and livelihood.

“My best friend was found hanged, she took this drastic step because of the stigma; she was called names and mentally harassed by family members, and that’s how I decided to work with LF patients,” says Swain.

She points out that young girls find it difficult to get married if they get this disease. “In most cases here, we see that the bride’s family hides the condition from the groom’s,” said Bishnupriya. She includes men in most of her meet-ups, creating awareness about the related stigma and superstitions faced by women with LF, and how the menfolk can support them and help them lead a normal life. Besides, she also teaches the sufferers how to clean the affected area with soap, warm water, and a towel to get some relief.

What is Lymphatic Filariasis?

LF was first mentioned in India in the sixth century B.C. by the ancient Indian physician Sushruta in his book “Sushruta Samhita”. Another treatise titled “Madhava Nidhana,” written by Madhavakara, also has accurate descriptions of the disease’s symptoms. Clarke referred to the elephantoid legs of Cochin as “Malabar legs” in 1709. Lewis made the initial discovery of microfilariae (mf) in peripheral blood in Kolkata City in 1872.

Filariasis is a common name for a group of diseases carried by parasitic worms that are members of the superfamily Filarioidea. These parasitic adult worms are spread by vectors and reside in the human body cavity, cutaneous tissues, and lymphatic system.

“Lymphatic Filariasis (LF) is a type of filariasis brought on by nematodes that inhabit the human lymphatic system,” said Dr Syed Iftiqar Ahmed, a Tropical Medicine Specialist. “Brugia timori, Brugia malayi, and Wuchereria bancrofti are the three nematode parasites that cause LF in humans. Only Brugia malayi and Wuchereria bancrofti are present in India. In mainland India, the most common illness accounting for 99.4% of cases is Wuchereria bancrofti, which is spread by the ubiquitous mosquito vector Culex quinquefasciatus. The virus is widespread in different geographical locations.” 

The characteristic of the disease includes severe swelling of the limbs, genitals, or breasts, known as lymphedema.

Why Advanced LF is hard to treat

Advanced cases of LF can only be treated symptomatically.  Dr Kavita Singh, Director, Drugs for Neglected Diseases Initiative, South Asia said; “Presently the clinicians do not have access to a treatment which can treat the patient if they are harbouring large worms, as there is no drug which has a demonstrated effect in a clinical study. There is a need for the development of macrofilaricidal / curative drugs in order to mop up residual foci after the disease burden has been reduced by MDA (Mass Drug Administration)/ Triple Drug Therapy ( IDA, Ivermectin, Diethylcarbamazine citrate and Albendazole) programs.”

Dr Singh said that there is no cost-effective way to treat patients in endemic areas that are difficult to reach, and that this means it is not possible to accelerate the goal of eliminating LF”

“Hence, there is an urgent need for the recognition of an additional approach for lymphatic filariasis elimination that is adapted to regional differences,” Dr Kavita Singh said.

LF has traditionally been considered a disease associated with poverty, inadequate sanitation, and underdevelopment. Those afflicted with LF are often socially marginalised communities. Women are more susceptible to acquiring this infection due to their work conditions involving cooking, cleaning, and standing in long queues for fetching drinking water in areas replete with the filarial mosquito’s breeding ground — stagnant, dirty water.

 “I know LF cases are reducing, but what about us, with heavy feet and a heavy heart we remain like this. We can’t even do our daily routines properly. And society looks down on us and calls us Godara (demeaning name for LF patients in Odisha.”,” says Surindra Dorai, 60, a resident of Brahmagiri. 

Visible disfigurement caused by LF has profound physical, emotional, and social consequences for patients. It leads to social stigma, discrimination and isolation, exacerbating feelings of shame, embarrassment, and low self esteem leading to depression, anxiety, and even thoughts of suicide.

Many patients struggle to cope with the physical limitations imposed by the disease, such as difficulty walking, performing daily activities, or engaging in social interactions, further contributing to the feelings of hopelessness and despair.

Dr Anant Bhan, a mental health expert and founder of Sangath Bhopal Hub, says, “Mental health issues can lead to one consequence after another. Stigma and lack of education in society might be one reason. Gender issues can also impact the patients. Superstition, on the other hand, can lead to repetitive behaviour, e.g., obsessive-compulsive disorder.”

He emphasised on installing screening tools in government hospitals to educate the patients on the disease. 

The necessity of further drug research for advanced LF disease 

The National Filaria Control Programme in India, inaugurated in 1955, has been working towards vector control, detection and treatment of filarial cases, and demarcation of endemic regions. These activities are executed through control units, night clinics, and survey teams. This programme remains active alongside India’s LF elimination efforts till date.

In 1997, the World Health Organization (WHO) and its Member States committed to eliminating LF as a public health issue by 2020. The National Health Policy (2002) established the target of LF elimination in India by 2015. However the set target has not been accomplished yet with new cases being reported from rural India time and again.

Dr Martin Walker, Assistant Professor, Epidemiology at Royal Veterinary College, University of London, Co-Head Schistosomiasis/STHs and Lymphatic Filariasis, said “There is not much research related to LF patients in the advanced stage, and this is one of the reasons as to why it is called ‘Neglected Tropical disease’.” 

Advanced cases dampen hope for effective treatment

Ranjana Dalei, a 50-year-old resident of Bramhagiri village in Puri District, Odisha, attributes her swollen feet to a past injury — a fall that resulted in a waist injury during her youth. 

The origins of her ailment remain a mystery. “A sticky and watery substance discharges from the swollen portion, and the entire area faces scaling,” she says. “I was admitted to the local hospital for seven days, during which a machine extracted water, and I underwent surgery three times to remove fluid from the affected area.”

Ranjana told Health on Air that the problem escalates when a menstruating girl touches her during her own menstrual cycle. She insists that such encounters have significantly contributed to the swelling in her feet, complicating her overall health situation. 

“It generally happens when any girl touches me on the first day of her menstrual cycle; this induces a fever and swelling in my feet.” added Ranjana.

Her belief in connection to these specific events remains steadfast, reflecting the complex interplay between personal experiences, cultural beliefs and superstitions and living with the unending hopelessness in shaping health perceptions. 

“Filaria cases have been seen reducing a lot,” says Dr Malay Barah, of the community health centre in Nuagaon, Puri district. “Even people are keeping their community spaces clean. But stigma is there for advanced cases, maybe less now but it still prevails. Sometimes we address a few of the old LF patients with other ailments, but mostly they visit Puri Govt hospital. “

Limited awareness and understanding of mental illness, coupled with pervasive stigma and discrimination, often prevent advanced LF patients from seeking help or disclosing their struggles to healthcare providers or family members. Furthermore, the scarcity of mental health professionals and resources in rural areas, where LF prevalence is highest, poses a formidable challenge to providing timely and effective care.

While government initiatives aim to eliminate the disease, community involvement and awareness campaigns, as exemplified by Bishnupriya Swain, play a crucial role in reshaping the narrative and providing mental health support to those affected. 

India’s method of elimination so far

Surveillance and monitoring efforts are integral to efforts to control LF, with the government conducting regular assessments to identify cases and evaluate the impact of control measures. This includes mapping the disease distribution, monitoring infection prevalence, and assessing the effectiveness of MDA campaigns.

Dr Siddhartha Niyogi, Director of Health Services, West Bengal, said, “Health system is ready to combat LF in Bengal, and cases are really reducing.  But people should also come forward for testing. As the test is done in schools everyone should cooperate. Also more awareness is needed”

He said that the department is addressing the transmission via mosquitoes with strategies such as reducing breeding sites, promoting the use of insecticide-treated bed nets, and minimising mosquito-human contact in the state so that the disease can be eradicated from its roots.

Health education and community engagement play a pivotal role, with campaigns raising awareness about LF and emphasising the importance of adhering to prescribed medications during MDA, reducing mosquito exposure, and seeking early treatment.

Integration with other health programs also optimises efficiency, leveraging existing healthcare infrastructure to reach a broader population. Surgical interventions and morbidity management are provided for individuals in advanced LF stages, aiming to alleviate symptoms and enhance their quality of life.

India’s progress is visible in the fact that several states have been validated by the World Health Organization for eliminating LF as a public health problem. 

While India excels in addressing the physical aspects of lymphatic filariasis (LF), mental health awareness remains notably absent from the program, thus necessitating a holistic approach with integrating mental health education, counselling, and community support into the LF elimination program. Dr Syed Iftiqar Ahmed, said, “ Lack of research related to NTD poses a serious challenge which is linked to the disease investigation. Like lack of infrastructure, socio-economic system, culture, conflicting health policies and research ethical requirements. Mental health issues are obvious for disabling disease like LF. ”

While government initiatives aim to eliminate the disease, the cases of the severity of mental health issues are only found through community involvement and awareness campaigns, as exemplified by Bishnupriya Swain, which play a crucial role in reshaping the narrative and providing mental health support to those who are already are suffering and whose hopes are waning. 

**Reporting for this story was supported by the MSF-DNDi Grant on Neglected Tropical Diseases as part of the Without Borders Media Fellowship. The fellowship encourages independent, impartial and neutral reporting on health and humanitarian crises.**

2 responses to "Mental Health Challenges Abound for Lymphatic Filariasis Patients in India"

    Avatar BISWABEDA ACHARYA says:

    Thank you to the author, Ms. Chandrani Sinha, for penning such an insightful article. It indeed serves as an eye-opener, revealing the stark disparities within Indian society. Despite being a trillion-dollar economy, we’re still grappling with diseases like Lymphatic Filariasis, which should have been eradicated long ago. Many individuals continue to endure unhygienic living conditions, devoid of basic facilities, despite the government’s lofty promises. Kudos to the author for shedding light on this marginalized segment of society, still striving for basic necessities.

    Avatar BISWABEDA ACHARYA says:

    Thanks to the author, Ms. Chandrani Sinha, for penning such an insightful article. It indeed serves as an eye-opener, revealing the stark disparities within Indian society. Despite being a trillion-dollar economy, we’re still grappling with diseases like Lymphatic Filariasis, which should have been eradicated long ago. Many individuals continue to endure unhygienic living conditions, devoid of basic facilities, despite the government’s lofty promises. Kudos to the author for shedding light on this marginalized segment of society, still striving for basic necessities.

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