by Dr Reshma Shrinivas, Medical Officer In-charge, Project Samrkasha Thalassemia Day Care, Rashtrotthana Parishat, Bangalore
On 1st March 2016, when 13 year old Viren(name changed) was brought to Samraksha for the very first time, he was carried by his father on his back. The staff was surprised looking at a 13 yr old being carried by his father. The father explained to us saying Viren cannot walk even a furlong distance.
"State level Consultation on Status of Thalassemia and Other Hemoglobinopthies in Karnataka" was organised by Sankalp India Foundation with the major thalassemia centers in Bangalore as co-hosts on 9th of March 2016 at Rashtrotthana Parishat, Bengaluru.
An insight into the real problems that confront thalassemia management.
Since the beginning of this century, the availability of oral chelation therapy has enhanced to opportunity to improve overall survival and quality of life of patients suffering from thalassemia. However, are we adequately monitoring the overall survival associated with management of thalassemia? This is crucial because it may help identify the gaps in the delivery of healthcare to the patients.
Fifteen-year-old Pavan Kumar Singh is a known thalassemic child. When he was diagnosed at the age of 3 months, his family did not have an idea what thalassemia was. He was taken to every possible hospital in Bangalore to find out if there was a cure for his condition. Every doctor they met told them that it was a chronic condition and he had to be on treatment and blood transfusion for his well being and survival. His family lost hope and they decided to end their lives along with the kid.
November 14 2011 saw the birth of a new commitment for volunteers at Sankalp. From a bunch of volunteers taking up emergency blood requests and organizing a few blood donation drives, we took up something more serious and potentially game changing.
It was around July last year when we decided to put laziness behind and initiate the Sunday get-together for Thalassemia. There was a situation where several parents wanted to meet us and have discussions about various issues faced by their children. We earmarked Sunday as a day for all those meetings with the parents, exploring the strategies to improve the management of the disorder as well as take small steps in direction of the cure.
