About 15 years ago, nephrologist Sanjay Pandya, MD, noticed that his patients were facing difficulties understanding their kidney diseases, including what to eat or not eat, and what other care they needed. He thought that if there were a book that spelled everything out in a single source, it would be useful to his patients, and he could then reduce the amount of time he spent counseling about these topics.
So, in 2006, Pandya, who has a private practice in Gujarat, India, wrote a book, “Save Your Kidneys,” in his native Gujarati language. The 200-page text, given free to patients, contained basic information about kidneys and how they function, advice on how to help prevent kidney disease, information about various kidney diseases and their causes and treatment, and comprehensive information about dialysis and transplantation. The book became so popular that he then thought to prepare a second version translated into Hindi, the national language of India, to make the information accessible to a wider audience. That, too, became popular among patients.
Then he dreamed bigger, and by 2010 had created the nonprofit Kidney Education Foundation and posted the information to a website he established, called KidneyEducation.com. Shortly thereafter, he developed an English version of the information. That’s when things really took off. Tushar Vacharajani, MD, a nephrologist in Cleveland, joined the project as an international liaison officer and, with Pandya, contacted other nephrologists around the globe asking for help.
Within a span of about eight years, they amassed a team of about 100 nephrologists, who together have made the information available in 37 languages, including Italian, Chinese, Spanish, French, Arabic, Russian, Portuguese, German, and Japanese, through KidneyEducation.com. The project has attracted the attention of some notable leaders in the world kidney community, including Giuseppe Remuzzi, a past president of the International Society of Nephrology, who prepared the Italian version of the book and website, and Guillermo García-García, a past president of the International Federation of Kidney Foundations, who prepared the Spanish versions. Books in Chinese were printed and distributed free to patients by Ho Chung Ping in Hong Kong. The educational resource is now available to read online, through the WhatsApp mobile application, and through free book downloads.
The website has been accessed over 60 million times, Pandya said. In 2017, the Golden Book of World Records awarded the foundation a certificate for having an e-book in the most languages.
The number of patients suffering from chronic kidney disease is on the rise, Pandya noted. However, he said, ignorance about kidney diseases is widespread. “An important step toward fighting this ignorance is publishing of books and websites on kidney diseases in multiple languages for the benefit of patients and lay persons.” Resources like this do not exist elsewhere, at least for non-English speakers, he said.
Many patients’ disease is not curable, Pandya said. “But if they are diagnosed early, and if all care is taken precisely between visits, they can have a good quality of life for a pretty long period. That’s the reason prevention, early diagnosis, and better care is the mission of this activity.”
Anupam Agarwal, MD, FASN, president of the American Society of Nephrology, met Pandya in November 2019, when Agarwal gave a presentation at the 50th anniversary of the Indian Society of Nephrology. Following his talk, Pandya introduced himself and showed Agarwal the information on his mobile phone. Agarwal said he was amazed.
“A lot of educational material you see is directed by sponsors,” said Agarwal, director of the Division of Nephrology and executive vice dean of the School of Medicine at the University of Alabama at Birmingham. “This is an open source, free of any advertisements, so it really provides a legitimate and balanced point of view for patients to understand and get information about their disease. That’s a huge plus, and the fact that it’s available in so many languages makes it all the more valuable.
“Everybody, even in developing countries, has a mobile phone now, and access to the Internet, so this is a tremendous resource that they can tap into for free,” Agarwal said. “These are the kind of tools we want to make available to our patients to increase awareness about kidney diseases.”