Friends of Max’s Patient Advocates of the Month for September 2021 are an inspiring couple from Jaipur – Kamala and Krishna Modani.
Krishna Modani grew up in a village near Jaipur. After obtaining his BCom Hon., MCom and LLB degrees; and his two Diplomas in Labour Law and Computers, he took up a job in the Telecom Sector under the Government of India.
Kamala meanwhile spent her childhood in Garhwal district of UP and finished her education from Kotdwar. Their fates were intertwined when their parents arranged their marriage in 1975.
In January 2003, when Krishna came home after conducting an audit, his wife complained of lightheadedness. Dismissing the case as “cervical spondylitis”, the couple chose to ignore it. But while attending a wedding in Pushkar later that month, Kamala felt a sudden pain in her stomach and was unable to eat anything.
“On our way back from the wedding she asked me to feel her stomach as it had become very hard. Indeed, it was hard as a rock. This was when I first felt that something was not right”, says Krishna, who took her to see a doctor first thing back in Jaipur.
They were referred to Dr Mahinder Garg at SMS Hospital, Jaipur, who conducted a series of tests on Kamala, which revealed her WBC count to be 2.11 lakhs. The couple then consulted Kamala’s younger brother, a doctor in Mumbai, who informed them that Kamala was suffering from Blood Cancer and arranged for an appointment under Dr S. D. Banavali at the Tata Memorial Hospital, Mumbai.
“We met Dr Banavali in February 2003, who was very straightforward in telling us that she had only 3 years to live”, says Krishna. Over the next 15 days, Dr Banavali ran a series of tests on Kamala and put her on the medication Hydrea. He also pleaded her case with Novartis India so that she may receive free supply of the drug Glivec, which cost about 1.5 lakhs for a month’s supply at the time.
“I felt as if my lifespan had been shortened and I would never be able to do a lot of the things I wanted to do before I passed away”, says Kamala. Krishna adds, “It was just unbelievable. She was a role model for the entire neighbourhood because of her fit physique and bright smile.
Around two and a half months later, they received a call from Dr Banavali’s office informing them that The Max Foundation had approved them under the GIPAP programme. Since then, the couple has been visiting Mumbai once every three months to collect their supply of medicines and Kamala has made sure to never miss a single dose over the years.
Today, Krishna and Kamala Modani are pillars of the FOM City Chapter in Jaipur. Recalling his first Patient Support Group Meeting experience, Krishna says, “The first time I attended an FOM event was at the SMS auditorium in Jaipur. Here Amma (Viji Venkatesh) invited me to speak on stage in front of hundreds of people. I have been associated with every step of my wife’s CML journey and it was a big moment for me to share her story with so many eager ears.” Since then, they have made it a point to attend all FOM meetings in Jaipur and Krishna looks forward to speak at such events.
Krishna and Kamala are very thankful to The Max Foundation team for making it possible for them to collect supply from Jaipur during the lockdown months. “In January 2020, I had booked tickets for Mumbai to collect the next three months’ supply. Soon after, there was the announcement of a countrywide lockdown and we were in deep despair as to how to procure medicines”, Krishna says, “After trying everything, I wrote an email to The Max Foundation. The team’s Programme Coordinator Komal Surve was quick to respond. She coordinated with Dr Banavali, got a prescription from him and arranged for collection of the drugs in Jaipur. The Max Foundation has really helped us a lot during these perilous times and this is an experience we will never forget.”
Krishna Modani is also engaged in social service outside of FOM. During the last decade, he had received training in acupressure. After his retirement in 2012, he started offering free treatment to people suffering from frozen shoulder, cervical spondylitis and other such diseases. He does not charge any fee and believes that “The service is reward enough”. He has also published four books on acupressure which are available on Amazon. He does not charge any royalty on these books because he wants to keep their prices low to make them more accessible.
Krishna and Kamala Modani live in a joint family, together with Krishna’s mother, two brothers and their families. They also have a son who is today an Assistant Director at BSNL. Kamala has been regularly taking her Glivec dose for the last 17 years and today leads a happy life. She says, “I exercise, do Pranayama and go on 3km walks every day. I eat healthy fruits. As a housewife, I perform all the household chores myself. I do have to face some minor side-effects of Glivec, but it is a small price to pay as compared to the alternative.” Krishna is very proud to state that his wife is the subject of admiration of the entire neighbourhood because of her jovial nature and her high spirits. She also enjoys listening to bhajans and Indian mythological tales on YouTube in her free time.
When asked if they have any advice for their fellow CML patients and caregivers, Krishna Modani says, “We should all make it life’s principle to eat healthy and warm food to reduce the entry of germs into our body. A majority of diseases can be avoided if we just adhere by this simple principle.”
About living with CML, Kamala adds, “I can only say is that Glivec is a gift for us. We should all be thankful to The Max Foundation for providing thousands of CML patients with access to this life saving drug. If we try to remain happy in life, and avoid thinking obsessively about the disease, then we can all lead a long and healthy life.”