Editorial

Time for Collaboration and Cooperation

It’s just about a year since we decided to take a big step forward to work towards setting up of our bone marrow transplantation unit. In the month of February we completed the 15th transplant at our center. Larger number of patients are seeking care and management within our network of centers and the queue of patients waiting for transplantation is steadily increasing. Thalassemia poses an enormous challenge to the society and defeating it will require an equally large response. It’s time to build upon our initial success and experience.

Follow-up on adverse events for donors

The care giving to donors does not end with the donation process. Since 2009 volunteers of Sankalp record details of adverse events in blood donation drives. A standard form which records donor contact details, complication details is filled and maintained digitally. The intention has always been to understand the reasons for such events and work on the gaps in delivering a safer blood donation drive. As a symbol of our concern, we follow up the very next day with such donors to understand if they are indeed in good health.

It’s 10/10 for our Bone Marrow Transplantions

21st January was a landmark day. It was the day when we discharged the 10th children from Sankalp-People Tree Center for Pediatric Bone Marrow Transplantation. The center which was inaugurated on 27th August 2015 has cured the first 10 children from thalassemia. All the children are doing well. We undertook the responsibility of offering a reliable, rational and affordable cure from thalassemia and we are happy to share that with 100% success in the first 10 transplants we have made firm progress.

Little Fahim's happy little story

Although born and raised in Chennapatna, the town of toys, Syed Fahim’s childhood was not a joyous one. His life was different form the other little kids he met in school. Every month, he had to travel to Bangalore – 60 kilometers away from home – for a pint of blood, the only thing his body couldn’t produce. During the rest of his time, he had to juggle between studies and failing health. Fahim was born in 2011. His mother Samren recalls how seven months after Fahim’s birth, he suffered heavily from cough, cold, and fever. Their local doctor referred him to St. John’s hospital in Bangalore.

Thalassemia - The Road Ahead

While the clamour to declare thalassemia as a disability grows around the country, year 2015 has brought realisation and reaffirmation to the long held perspective that we have at Sankalp India Foundation for thalassemia. As part of the counselling and motivational exercise, also as part of the speeches and the writings in the books, often the thalassemia families are told that their child should be treated like a normal child. Is this really true? Is it a fact that the child suffering from thalassemia could actually have a near normal life?

Let there be Cure

Offering HLA typing far and wide We started on a journey traveling the length and breadth of the country in the month of October to reach out to families suffering from thalassemia who have never explored the option of cure. The prohibitive cost of HLA typing makes it out of reach for most families and thus the option of cure is also far from being explored. Sankalp India Foundation is committed to enabling cure for children suffering from thalassemia.

Sundays @ Samraksha

Sundays have had a different meaning altogether for Project Samraksha, the Thalassemia Day Care Centre at Rashtroothhana Parishat. While the rest of the world enjoys their day off from work, the staff of the blood bank and the day care center put their best foot forward to work on their busiest day of the week. With the intention of causing minimal disruption to education and work for the families of children suffering from thalassemia. Samraksha continues work on the weekend. Individuals who need to come to the centre more often than the others are scheduled to come on Sundays.

Blood banks can now help cure thalassemia

It is well known that children suffering from thalassemia need blood transfusion and iron chelation every month. While the suffering and pain is borne by the child, the financial implications of this regular routine are quite demanding for many families. In the past we have seen that a few families shun the idea of regular management owing to the lack of financial resources. Since 2011, at our thalassemia day care centres in Bangalore we are looking to make management of thalassemia and not the financial aspect related to it as the point of focus for patients and their families.

What do we owe the blood donor heroes?

1st October is celebrated as National Voluntary Blood Donor’s Day in India to mark the birthday of Dr J G Jolly who is believed to have spearheaded the movement to promote Voluntary Blood Donation in the country. Several voluntary organizations across the country marked the day with blood donation drives and other celebrations including felicitation of regular donors. A few blood banks and hospitals organized CMEs. Sankalp too could have organized an event and marked the special day. Instead we chose to do something different.

Bone Marrow Transplantation unit managed by Sankalp is now a reality

A new hope, a new silver lining has surfaced for little children suffering from the pain and burden of thalassemia. A new Bone Marrow Transplantation unit (BMT) with an exclusive focus towards treating thalassemia children has been jointly established by Sankalp India Foundation, Cure2Children and People Tree Hospitals at Bengaluru. This unit is the one of the two centers in the country and first of its kind in South India, that has an exclusive focus on thalassemia and is setup on a Not For Profit basis.
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