Patient Support Group Meeting for Kerala – Report by Ravikumar

I am proud to report on the second Virtual Patient Support Group Meeting in Kerala which was held on 26th February 2022.

Having experienced the first virtual meet and the subsequent online meetings we attended, everyone was comfortable and felt like we are attending a live session. The web-based live session was attended by more than 100 participants.

The meeting started with a welcome speech by our dearest Beena Chechi with an introduction and agenda of the meeting. It was for the first time we had our FOM Trustee Pramod George from Mumbai joining to support and motivate our patients. He spoke regarding “The Role of Patient Leaders in Patient Outreach Programmes” where he explained how patients can become leaders, how to convert one’s weakness to strength and how to become a role model. He also shared a personal experience of his recent visit to Kerala, how the patient network and the timely intervention of a patient leader helped him to get medicine without any delay.

Regional Head of Programmes, South Asia, Dipanwita Maiti invited the expert panel of doctors to share their experiences with the various aspects of managing CML. The discussion was very informative, and the physicians explained patients the importance of being regular in treatment and medication. We had Dr Narayanankutty Warrier, Dr K Pavithran, and Dr Sanju Cyriac on the panel.

The Q&A Session with medical experts was well moderated by Dr Sanju who explained in a very simple and easily understandable manner while compiling all the queries. In the session the expert doctors showered their kindness as answers to the very common as well as the rare areas of CML and the side effects of Imatinib /Glivec, the food restrictions, messages to the care givers, monitoring of CML, regarding the family life of patients, views and experiences of our doctors on CML patients and their family and social life, regarding improvement in the quality life of CML patients with the magic bullet. Also, how to take precautions against the Pandemic, regarding the Covid vaccine etc. The session had our senior doctors Dr Narayanankutty Warrier, Dr K Pavithran and Dr NP Prakash.

The Vote of Thanks was delivered by Priyanka Kandalgaonkar.

Amma then spoke about importance of compliance, and she encouraged patients for compliance.

Later, Shalini explained the MAS guidelines and importance of compliance with a presentation. She also included the challenges faced for compliance.

Beena Chechi made the session lively by asking our patients to share their views on compliance.

FOM City Chapter leader Sajeevan shared his experiences with CML and how it impacted and improved his approach towards life. Also, he explained about FOM and its activities in a very simple way. Our Communication Manager Aashray Paul explained about the role of Friends of Max in a very beautiful manner. Our Trustee Pramod George also shared how FOM helps the community by sharing, caring, and learning.                 

This was followed by a sharing and learning programme where Friends of the Magic Bullet, Glivec, shared their experiences with CML. The testimonials were from Nandini, Chitralekha and Rajeevan. The speakers shared their lessons on impact of CML and Glivec in their lives.

Punnya was the centre of attention as she started her companionship with the Magic Bullet as a paediatric patient. She motivated us with her energetic and confident approach towards the disease and her positive mindset. Recently she had an all-India tour and was well appreciated for being an inspiration to all.

It was very difficult for all to depart from the meeting, even though it was a virtual meet, we felt as if everyone was present in front of us and it was very difficult to wind up.

Thanks a lot to Amma, Beena Chechi, Dipanwita, Priyanka, Pramod, Aashray, Shalini and all the FOM members and the doctors for conducting this virtual meeting.

– Report by Ravi Kumar, FOM Kerala City Chapter Leader