Blood and Blood products are needed 24 hrs a day, 365 days a year- for emergencies, surgeries, organ transplants, to treat burns, injuries, heart disease, thalassemia, sickle cell anemia and many other medical conditions.
Sankalp India Foundation's programs have often been designed with focus on maximizing benefit to the end recipient. Our Rakta Kranti program however is a little different. Here the focus is the donor the selfless, heroic blood donor. Through the nearly 950 blood donation drives and approximately 83000 units of blood collected, we have focused only on quality in drive execution with maximum compliance to standards.
Sukrana Two years back, in the first few day of March, Sukrana received her bone marrow transplantation at South East Asia Institute of Thalaasemia Jaipur. It was the first transplant supported by Sankalp India Foundation and the beginning of a journey towards cure from the disease.
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.
There is a time, when in life some families face lot of difficulties, struggle a lot, and then, they came over of hard time. Daiyaan's family is a perfect example of this.
Sankalp Program for Thalassemia Management is aimed at ensuring that adequate and appropriate care is provided to each child taking coming to our centres. The overall aim is to resume normalcy in their lives. A key component in this pursuit is reducing the time it takes to provide appropriate medical intervention. For individuals who need to come back for follow-up every few weeks and for patients who travel long distances to seek care, every hour saved matters a lot.
Whose responsibility is it to provision safe blood for patients in need? The patient/patient family? or the hospital/blood bank? or the blood donor/donor organizations or all of them together?
