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Living with lymphatic filariasis: stigma, struggle and tenuous survival for thousands in India

Muzaffarpur/Gopalganj (Bihar), Mar 11 (PTI) Imagine carrying 10 to 20 kg of dead weight on your foot or arm every day of your life. Now imagine being stigmatised for it, losing dignity, respect and the ability to work. That’s how life is for many thousands of people suffering from lymphatic filariasis, a neglected tropical disease commonly known as elephantiasis.

Muzaffarpur/Gopalganj (Bihar), Mar 11 (PTI) Imagine carrying 10 to 20 kg of dead weight on your foot or arm every day of your life. Now imagine being stigmatised for it, losing dignity, respect and the ability to work. That’s how life is for many thousands of people suffering from lymphatic filariasis, a neglected tropical disease commonly known as elephantiasis.

With 40 per cent of the global case load, India is amongst the countries most affected by the disease caused by parasitic worms and transmitted to humans through infected mosquitoes. It is mostly concentrated in Uttar Pradesh and Bihar, where lymphatic filariasis has historically been a public health worry due to various factors, including population density, poverty and limited access to healthcare services.

A mass drug administration (MDA) programme has been key in the strategy to control LF in Bihar and Uttar Pradesh. Besides, patients with more than 40 per cent disability have been issued unique disability IDs that give them a monthly pension of Rs 400.

Beyond the numbers though is the stark reality of living with a disability that is not reversible and no cure, leaving many women in particular alone and abandoned by their families.

At 65, Kaushalya Devi, who can barely manage to move with a massively swollen left leg, finds that lymphatic filariasis has robbed her of any agency over her life. And it is not just about her physical limitations.

“Over a period of time, I lost any and every decision making power in my family. Then my husband and my children started getting irritated with me and moved out. I now stay alone and work as a domestic worker to make ends meet,” Kaushalya, from Meenapur village in Bihar’s Muzaffarpur district, told PTI.

Kaushalya, who manages to make about Rs 80-100 a day depending on the work she gets, has got a disability card that gives her Rs 400 a month. But it’s just not enough, she said.

When lymphatic filariasis develops into chronic conditions it leads to lymphoedema (tissue swelling) or elephantiasis (skin/tissue thickening) of limbs and hydrocele (scrotal swelling).

Meena Kausar lives not too far away.

The social stigma associated with the disease is the most difficult aspect to live with, the 34-year-old said, echoing Kaushalya “I wear saris and not salwar kurtas to hide my feet. People stare and some even consider us ‘manhoos’ (cursed). We are not called to weddings or auspicious occasions. This is a disease caused by mosquito bites but how many people know that.” “When an acute attack occurs, it feels like one is going to die,” she said, recounting the agonising pain attack every week or 10 days. Acute attacks in lymphoedema denote sudden and intense bouts of swelling, inflammation, and discomfort in the affected limb or area. Typically occurring in individuals with chronic lymphoedema, these episodes can be triggered by factors like infection, trauma, overuse, climate changes, or hormonal fluctuations.

Meena said it is a very expensive disease to manage.

'I've borrowed Rs 2.5 lakh for my treatment, and to repay the loan, I work as a farm worker, earning just Rs 80 per day. Moreover, my disability limits my ability to work to just three-four hours a day, leaving me with no other viable means of income.' According to Neetu Kumari from the NGO Centre for Advocacy and Research (CFAR), women filiaria patients face a unique social predicament as there is a lack of concern from their own family.

'When the diagnosis of filariasis is first confirmed, families often initiate treatment. However, it's crucial to understand that this is a lifelong condition with no cure, only control. As time passes, families, especially those already burdened by poverty, carry on with their lives. The financial strain of managing this disease often leads to taking loans, which gradually breeds resentment within the household. Tragically, it's all too common for these women to be abandoned.' she said.

Men, too, confront their own trials.

Ram Sagar Bharat, once a hopeful 20-year-old young man with dreams of joining the army, now grapples with the debilitating effects of filariasis.

Now 60 years old, Bharat has developed lymphoedema and both legs have been infected and he can’t move without support. But he has to pay back a loan of Rs 2 lakh and has to continue to work as a daily labourer in the field in Sher village in Bihar’s Gopalganj district.

“The situation is such that a slight scratch in the foot can result in high fever for seven-eight days. Life has never been easy but since this disease it has been unbearable. At times, I feel it is better to die than live like this,” said Bharat, who like Meena suffers from frequent bouts of acute pain.

Dr Rakesh Kumar, chief medical officer in Meenapur village, said the only thing that can be done for these patients is to mitigate the progression of the disease.

“For individuals grappling with over 40 per cent lymphatic filariasis, the onset of lymphoedema leaves them physically incapacitated, robbed of their mobility and independence. It's crucial to recognise that this condition is irreversible. Once infected, the damage persists,” Kumar told PTI.

The MDA programme involves giving medicines to entire communities in areas where the disease is prevalent. The goal is to kill the worms in infected individuals and prevent the spread of the disease.

Muzaffarpur has 15,090 cases of lymphoedema and Gopalganj 8,017 cases, according to official data. Bihar counts for 1.57 lakhcases in total. According to data from the Union Health ministry, about 2 lakh of India's 5.5 lakh lymphoedema patients in 2022 were in Uttar Pradesh.

Akhila Sivadas, CFAR executive director, stressed the imperative for bridging the gap between patients and the available support schemes.

'It's paramount to expedite the process of providing them with UDID (unique disability ID) cards and facilitate access to their pensions and assistive devices like callipers and western commodes... Furthermore, efforts should be made to integrate them into income-generating activities, skill development programmes and supportive ventures such as small enterprises,' she said.

India has committed to eliminating lymphatic filariasis by 2027, three years ahead of the global target through a multi-partner and multi-sector targeted drive.

The challenges are many.

According to Dr Parmershwar Prasad, additional director and Bihar programme officer of lymphatic filariasis, one hurdle is that symptoms do not show up immediately but after 10-15 years. Prevention, therefore, is a key strategy here. If you take medication once a year for five years straight, the disease won't worsen anymore. The damage it causes is permanent, but starting the treatment early can sometimes help reverse some of it.

“Additionally, efforts have been made to improve sanitation, hygiene, and mosquito control measures which can help in making the disease condition worse during acute attacks,” Prasad said.

Till sanitation improves and mosquito breeding is controlled, the disease will continue to strike. And people like Kaushalya, Meena and Bharat will continue to carry the weight of it all their lives. PTI UZM MIN MIN

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