Anjali Uthup – ‘Sunshine and Soul’
Anjali Uthup lives for those moments of joy that she brings into the lives of people with end-stage kidney disease and their families. For her now it is not the applause that comes with being a successful media professional that drives her, but the glance of the desperately ill that says, “I know I'm not alone in this, you are there...” Her first brush with transplantation actually began with a campaign for organ donation in her daughter Ayesha’s school in 2014 where the speaker was Dr. Philip G. Thomas, transplant surgeon in Kochi. In 2015, Dr. Thomas wrote a book called ‘Transplant Story’ about a patient who needed a liver transplant. Little did Anjali know that a day after she would finish reading it on 30th June 2015, her brother Sunny would be diagnosed with end-stage kidney disease as a result of IgA nephropathy. The news was shattering, and while she had some understanding of the transplant process, it was still a completely alien world. However, she had access to some of the best transplant surgeons in the country, Dr. Philip G. Thomas, and Dr. S. Sudhindran. Anjali describes Dr. Thomas was her mentor who set her on the path to helping patients with organ failure and gave her insights into the lives of these patients and their families. He continues to mentor her even though he now lives in the US.
On her show India Diary, in an episode on the harrowing story of a young woman with end-stage kidney disease called ‘Sejal Jobanaputra: The Warrior Princess,’ Anjali poignantly says, “The life of a transplant and dialysis patient is always somewhere the space between darkness and light. And you have to wake up every morning and say, yes, it is going to be a brand new day and I’m going to make it good.” Anjali says that her work in t h i s s p a c e h a s ‘usurped’ her life in the best possible manner, even though it is heartbreaking many a time. Being witness to the inequities in not just access to healthcare, but even basic needs like water and toilet facilities for the patients she interacts with, has hit her hardest in Mumbai, the ‘city of dreams.’ She has seen patients sell medicines so that their families can survive another day, spoken to patients just hours before they died, and yet she has persevered. Anjali’s mother, Padma Shri Usha Uthup, a trailblazer in Indian pop music and father Mr. J. C. Uthup have given her the strength to fight this uphill and sometimes overwhelming battle. For Ayesha and Riyad, her children, the intense work that she does is a part of her persona,not an oddity.
They are extremely supportive and proud of her, as is Anjali’s husband John. One day she could be in the slums of Dharavi in Mumbai and another day in a city in Kerala – in a home, a dialysis centre or hospital.The emotional succour that she offers to patients in different cities is in itself immeasurable, but chronic kidney disease is also extremely demanding financially and Anjali helps them in this as well – either through well-wishers or personally. As a Christian, she believes in ‘tithe’ and she says that giving away a part of one’s earnings is something one just does.
Anjali writes eloquently in the book The Kidney Warriors that her grandmother’s eye donation 26 years ago has always subliminally influenced her positive thoughts on organ donation. She feels that if people can give their body parts after their time, there is no better ‘karma.’ She also writes that it is important to not look upon end-stage organ disease as a punishment for one’s sins. Sitting outside the dialysis room with other caregivers, she found that learning from and leaning on one another was the best way to cope with the illness.
While it has been arduous for patients to deal with dialysis and medications in the COVID-19 pandemic, Anjali says that in Kerala it has been streamlined with access to care being available to them. She emphasises that taking one’s medication to prevent rejection is paramount and to never make any changes without the advice of one’s doctor. She also strongly believes that prevention of end-stage organ disease can be accomplished only through healthy lifestyle education being imparted in schools from the very first day. Anjali is all sunshine and soul and will continue to spread cheer in the lives of transplant and dialysis patients through Sunny Kidney Foundation, and she is unstoppable.
- Copyright © 2021. Published by MOHAN Foundation
- Keywords: Anjali Uthup, Transplant Story, Kidney Warriors, Sunny Kidney Foundation, India Diary, IgA nephropathy end-stage kidney disease