"It all started 10 years back when I got a high-grade fever. Today, I have Haathipaon on my right leg. Because of this, I always had a swollen leg and foot which prevented me from wearing a payal or bichiya. I went for treatment to a couple of places, but nothing worked and I used to often be upset."
Reena Singh, hailing from Ballia district in Uttar Pradesh, has been a patient of lymphatic filariasis for over 10 years now.
Lymphatic Filariasis, a neglected tropical disease (NTD), also known as elephantiasis, is a painful, disfiguring disease that is spread by mosquitoes.
It causes the abnormal enlargement of body parts and can lead to disability. The infection is usually acquired in childhood and causes hidden damage to the body’s lymphatic system.
Lymphatic Filariasis threatens 859 million people in 50 countries. In India, 720 million people are currently at risk of contracting the disease.
Malti Devi, an active member of the filaria patient network from Bakshi-ka-Talaab, Lucknow, says that one of the most painful experiences she has had was when the primary school who had hired her as a cook, dismissed her summarily when the swelling worsened.
“It broke my spirit in many ways; the Rs 500 I was earning meant a lot to me, I was no more dependent on my husband and childrem. In the present context, I feel even more wronged as this income would have helped me a great deal to take care of my ailing husband and not be at the mercy of my children.”
Reena Singh,who developed Haathipaon, after a high-grade fever.
(Photo: Accessed by The Quint)
Stigma & Social Exclusion Due To NTDs
NTDs have a significant impact on gender equality, particularly in low and middle-income countries.
Women and girls are disproportionately affected by NTDs, primarily due to gender-based inequalities such as lack of access to healthcare, education, clean water, and sanitation.
For example, a disease like lymphatic filariasis can lead to stigma, social exclusion, and reduced productivity.
These can have a particularly significant impact on women and girls, who may be forced to drop out of school or give up work due to discrimination and shame and almost all are riddled by the guilt that they have not been good ‘mothers’ and caregivers.
In certain cases, NTDs can also increase the risk of maternal and child mortality, particularly during pregnancy and childbirth, confounded by the low self-efficacy.
Women-Led Patient Care Networks To The Rescue
We have come a long way from how NTDs were perceived, acknowledged, and understood; especially, cases where women were suffering from these diseases.
Earlier, there was limited awareness coupled with a lack of empathy shown to women patients.
Since this is a disease that usually peaks during the middle age, the stigma and distancing that women face because of this disease often makes for a tough experience. They end up feeling less ‘womanly’ and the inordinate stress they face in their intimate relationship as well as in public spaces and healthcare settings does not make it any easier.
With the emergence of patient care networks, particularly those led by women, we have sensed a growing feeling of empathy, understanding, and favourable sensitisation toward how significant diseases impact a woman’s physical and mental health.
"After joining the filaria patient support group, I got help. With regular exercise and morbidity management, I have been able to wear a payal now and the swelling is a lot lesser. This is my symbol of womanhood, and I am so proud of it. It also reminds me that I am bigger than the disease and I have the power to overcome it," says Reena Singh.
Pay Heed To Women's Healthcare
There is a need to empower women to fight through such diseases and more importantly, feel confident to seek health-based information and resources, as a right.
Women are definitely bigger than these diseases and so are their health needs and requirements.
Living with a disease like lymphatic filariasis can be hard but at the same time, with appropriate knowledge about the disease, timely, and sustained care, along with familial and community support, we can overcome the suffering in a more meaningful way.
There is also a need to build a conducive environment, one that calls for multisectoral efforts involving governments, NGOs, civil society organisations, and the private sector to provide access to healthcare, education, clean water, and sanitation, among many other interventions.
This will help disease sensitisation and elimination efforts at all levels – specifically for women and empower them to seek timely care and support.
(The author is Executive Director, Centre for Advocacy and Research, in New Delhi. This is an opinion piece, and the views expressed are the author’s own. The Quint neither endorses nor is responsible for them.)
(At The Quint, we are answerable only to our audience. Play an active role in shaping our journalism by becoming a member. Because the truth is worth it.)