Vasundhara Raghavan, who left the Media Research Users Council as Secretary General in 2005 after a decade with the industry body, has formed Kidney Warriors Foundation as an Apex body to make a difference in patients’ lives in managing kidney disease. This non-profit NGO will strive to assist families with a member suffering from kidney disease, because “this is a family crisis and not just an individual ailment” according to Vasundhara.
She should know. She is a kidney donor herself, as is her first son. Both donated their kidneys to her second son, who was born with a congenital condition which was detected too late. Vasundhara chronicled this in her book Shades of Life, Sublime Joy is in Living, narrating her family’s experience with stages of the disease ending in two transplants. She wrote it to share her view that kidney disease is not an immediate end and can be fought if the family comes together and fights this purposefully, with awareness of what needs to be done.
Sitting in her current home in Dubai, Vasundhara runs two facebook groups The Kidney Warriors and Diet for Kidney Patients, especially to serve kidney patients in India. The first group has admitted 1229 members, a mix of Stage 1-5, Dialysis and Post Kidney Transplantees along with Caregivers. Members undergo a stringent screening process to be sure of legitimacy. People join the group in desperate need for information on how to manage and save themselves. Group members teach them to accept the disease with all limitations placed on them. Senior Nephrologists are in the group and they clear many doubts for patients.
The second group has 2200 members from all over the world, including dieticians and health care workers. “Managing and controlling the diet is one of the critical steps for a kidney patient particularly on dialysis,” says Vasundhara. “We started with imparting knowledge of CKD (chronic kidney disease) diet, organised diet workshops with an expert dialysis patient where patients from all over shared their knowledge.”
The NGO Kidney Warriors Foundation will address the issues in the larger ecosystem that prevents proper care from being extended to kidney patients. “Our goal is to make the medical world and the legal framework for kidney transplants easier. There is a lot of awareness to be created. We can fight this disease, and we are enrolling like-minded people to take up this cause,” says Vasundhara.