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.
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?
On 23 December 2016, an incredible feat was achieved when units of extremely rare Bombay Negative blood group were transported from India to Sri Lanka for a patient fighting cancer.
Thalassemia major is characterized by the individual not being able to produce enough good hemoglobin. This is called ineffective erythropoiesis. This condition leads to a cascade of compensatory mechanisms.
Five years back, on 14th November 2011, with the cutting of a ribbon the Thalassemia Day Care Centre at Indira Gandhi Institute of Child Health was formally inaugurated. A small gift of children's day, a step in the direction of health, well-being and fulfilment of dreams for the little ones.
This year a young couple with 11 month old baby girl named as Prachi Bhanushali contacted us for help with Bone Marrow Transplantation.
It was more than a year back when we a family who had two little girls suffering from thalassemia from Afghanistan approached Cure2Children Foundation for help with HLA typing. The family was overjoyed to find that both the girls had a match. The father of the girls is a driver and could not have afforded transplantation.
The pathology department of JJM Medical College Davangere with it's associated blood bank at Bapuji Hospital organized a one day workshop on “Voluntary Blood Donation and Appropriate use of Blood Components” to promote voluntary blood donation and sensitize the medical fraternity about the need for rationale utilization of available blood resources.
Normally, when you tell a family which has a child who suffers from thalassemia, that they have a match, at least for one moment you expect to see a smile. This was not the case when we broke the news to five-year-old Nirmitha's family. She was detected with thalassemia within the first year of her birth and ever since she was dependent on monthly blood transfusions.
Recently, we had a situation where a pregnant woman who was close to delivery was detected with Bombay blood group. She was shifted to Bangalore because the local doctors were uncomfortable handling the situation. The lady had haemoglobin on 12 gm/dl and it was then that it was discovered that the patient had extremely low platelets as well.
Asia Pacific Bone Marrow Transplantation Meet was organised at Singapore from 28-30 October 2016. The Sankalp-Cure2Children Network was happy to have 6 of our posters selected to be presented at the meeting. In-line of our commitment to transparency, innovation and quality we continue to scientifically analyse and share our work.
How do we offer transplants to more children?
How do we make transplantations safer?
How to we ensure that the best quality is delivered at the least cost?
