In 2014, a few kidney disease patients started a group on Facebook for kidney patients to interact with each other and share their problems and solutions. Three years later, the group Kidney Warriors, with the tagline ‘Kidney disease is not our choice, it just happened’, has grown to 800 members.
64-year-old Vasundhara Raghavan, a Dubai-based author who donated her kidney to her youngest son in 1999, is one of the founders of Kidney Warriors. She says sharing one’s experience can be liberating. “People with kidney disease are reluctant to discuss their problems openly. So, our first effort of sharing information helped us to create an environment of confidence,” she says. Her eldest son also donated his kidney to his younger brother.
“We have more than 800 members across the country and gradually, they began discussing issues that troubled them, even personal, marital, financial and employment issues. In these closed group discussions, they also discussed how to manage disease with the right diet,” said Raghavan. Food always binds people together, and for a chronic kidney disease (CKD) patient, a correct diet is extremely important.
The diet can be bland for the patients, so in our closed group discussions we shared several tips on how to manage the disease with the right diet, Raghavan said. “Our diet group has over 1,800 members worldwide who interact with each other. It has many dieticians, who are new to renal diet and by participating in the discussions get insights into the diet. The disease group is strictly for Indians with an all-India presence of over 800 members, including many prominent nephrologists,” she said.
Hemant Shah, a chartered accountant in Pune, is part of the group and says it has been a year since he received a kidney from his mother. “It is a learning process for all of us as we want patients to stand on their feet and we know there are people to support them,” said Shah, adding that a get -together and awareness event will be held on April 30 in the city. Other topics on which events are held in the Facebook groups include ‘best dialysis practices’ and ‘diet for different stages of kidney disease’. Kidney Warriors issued a statement saying they have made efforts to promote delay in progression of disease through specific dietary modifications, have promoted organ donation and trained patients to live with positivity.
“Chronic Kidney Disease is a very complex disease as diet and disease management are very person-specific. Nephrologists struggle with the patient to unravel new issues as they emerge. Treatments, medicines and tests are also different and costs of treatment burden the person. Our work on Facebook has given them lots of self confidence. Our members have opened trusts and societies in Chennai, Bengaluru, Jaipur, Chandigarh and Trissur,” said Yashodhara Shrivastava, another member of the group.
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