Our Patient Advocates for the month of January 2024 are Caregivers turned Patient Advocates from Hyderabad- Pramod Kumar Agarwal and Krishna Agarwal.
Their life stories are a true testament of how drawing inspiration from one’s own understanding and experiences can help to contribute to a more fulfilling and inclusive patient ecosystem, which is better suited to meet the needs of patients and their families.
Pramod Bhaiya, as he is fondly called, is a FOM Trustee. Along with Krishna, City Chapter Leader, their success as patient advocates is a major contributor to why FOM is achieving higher levels of excellence in patient care today. Thanks to their efforts we are able to raise more funds, reach more patients from the interiors of Telangana and Andhra Pradesh and maintain our outreach with physicians and hospitals in these states.
Pramod’s mother Lalitha Devi was diagnosed with CML in January 2000. Naturally the family was devastated. After being on interferon for one and half years, she was put on clinical trials for STI – 571 (Glivec) at Singapore General Hospital from 1st June 2001. Pramod remembers drawing strength from his father’s strong mindset and a positive attitude. It was also during this time that he came across The Max Foundation, Friends of Max and the “Jaddu ki jhappi” by Amma (Viji Venkatesh). It suddenly made everything ok.
Krishna’s father was diagnosed with CML in 2005. In 2007, it was Pramod Bhaiya who introduced him to FOM.
Since then, along with Pramod Bhaiya, Krishna has also been attending all Patient Support Group Meetings. Even though Pramod lost his mother in 2018, he continues to be inspired by her memory and works with the same commitment and enthusiasm.
The Beginning
Pramod after completing his education from All Saints High School and St Thomas Junior College went on to graduate from Badruka college of Commerce and Arts, all in Hyderabad, after which he excitedly joined the family business.
Growing up, Pramod remembers being this very reserved person who would feel shy to do things in front of a gathering or even visiting a hospital, but his mother’s CML diagnosis changed everything. “Practical experiences make us more and more knowledgeable. Translating FOM reading material into Telugu, learning and using technology and many other things not related to our normal life, but which I have picked up during my association with FOM, have made me more skilled. Today through my role as a FOM Trustee and City Chapter Leader, I feel a deep sense of gratitude to be given this opportunity to give back to the society which has given me so much”, says Pramod.
Today he enjoys a blissful life with his father, Dwarka Prasad, wife Aarti (they just celebrated 25 years together) and two sons Mayank and Keshav (name given by Amma) and extended family of four brothers and their families.
Krishna, although traditionally hailing from Rajasthan, was born and brought up in Hyderabad. It is here that he completed his school from Sujata High School and later obtained an Engineering degree in Information Technology from Aurora’s Engineering College in 2010. He lives with his wife, daughter and parents.
He has been very actively involved in all FOM activities in and around Hyderabad since 2010. He however refuses to take any credit and attributes all the success of the FOM Chapter to the collective effort of the team. “I don’t think I have done any great deed. Every person should actively participate in giving back to society in their own capacity—be it money or time. I am just fulfilling my duty as a human being”.
Some experiences leave a lasting mark
Pramod remembers during a visit to Tata Memorial Hospital, Mumbai, he noticed a patient who had come there along with her attendants. They were crying and looked very worried. Being evening time with no other patients present, the situation seemed even more daunting. Not knowing what was in store for her, the patient was in distress. Pramod spoke to them of his own experiences and the magic tablet Glivec and remembers within five minutes the family was laughing and at ease. It was at that time that he felt how bold and fearless he had become from the shy person that he once was. The CML diagnosis of his mother had made positive changes in him.
Krishna fondly recalls the 2015 FOM All India Meet, which was organized in Hyderabad. “I was majorly involved in this event as it was up to the Hyderabad City Chapter to make all the arrangements. I got to meet many doctors and interact with people from all over the country. It was a special experience.”
Krishna also feels that FOM experience has had a positive effect on his personal life in a big way. It is from FOM that he has learnt that no matter the challenges life throws at us, we must face them with a smile and to this date Amma (Viji Venkatesh) has been as one of his biggest inspirations.
Their advice to CML patients is:
Pramod: “God is always with us and always shows us the path at difficult times in our life journey. FOM journey is a live experience and helps us to learn different perspectives. Life Challenges teach us many amazing things which we never dreamed of. FOM has now entered into a new phase where more and more patients are being included who can benefit from its projects which will help to relieve their financial burden and increase their access to better healthcare and diagnostic care. I hope more and more CML patients and caregivers come forward to take part in this movement to result in a more empowered CML community”.
Krishna: “I feel inspired seeing the will power and courage of everyone in fighting CML. I would also like to ask everyone to take this as an opportunity to give back to the society and do whatever little we can in improving the lives of people who are less privileged than us. And make it a habit to contribute something every month- not just in money terms.”
