The meeting was organized with the intention of developing synergy between the various centers involved in the transplantation for thalassemia as part of the Sankalp-Cure2Children Thalassemia BMT Network. The following organizations were represented in the meeting:
It was an incredible experience working in the Bone Marrow Transplant unit of People Tree Hospital -Sankalp collaboration. I absolutely fell in love with the meticulous nature and detailed organization in the system. It gives an opportunity to the physicians to remotely monitor patients with able assistance from the nurses.
I would like to mention a few incidents which have made a lasting impression on me.
Last year, we had shared how extremely high ferritin levels are being controlled using a combination of deferasirox and deferoxamine at our centres. "A Novel approach to control very high ferritin levels - our experience - (Volume 6 Issue 8 September 2016 Pg 6-7)" Iron overload is the root cause of the complications associated with thalassemia. Even for those children who find a match and thus have a chance to get cured - bringing down the ferritin levels is the first step towards transplantation preparation.
We read somewhere - "Perseverance is not a long race; it is many short races one after the other." Anushree personified it.
Bone marrow transplantation is becoming an increasingly acceptable curative option for patients suffering from thalassemia. This coincides with improved access to care and management of thalassemia. There is a need for a measure to be available for the patient families, support organisations, government and donors to make a truly informed choice on whether or not the option of a bone marrow transplantation of a particular kind at a particular centre is the best option for the patient. Overall survival post transplant and disease free survival are the generally used measures.
He may just pass on as just another man from the hinterland of Bihar when you first see him. Vijju’s looks of-course don’t give out the determined and courageous soul inside. He is the father of little Chetan - a child from Bhojpur, Bihar who suffers from thalassemia. He is a man who did not let limited financial means, travelling long distances and pressure from his family come in the way of ensuring that good treatment was available for his child.
