Recently, I was given the opportunity to do what I love the most to organise a Team Red training for students who were planning a blood donation camp in their campus at J.S.S.K.H. Kabbur Institute Of Engineering, Dharwad . Team Red is a team of volunteers who shoulder the responsibility to being in awareness and education in their campus and assist in the smooth execution of a blood donation drive.
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.
The importance of the blood donor questionnaire form in blood donation cannot be over-emphasized. Besides, the demographic and identification related information, the donor form has questions which impact both the safety and well-being of the donor himself or that of the patient. It is also the instrument to capture informed consent. The first and very important step in the direction of keeping both the donor and the patient safe is the blood donor questionnaire form.
However, there are significant challenges involved in achieving the intended goal of the questionnaire.
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.
(Dr Reshma Srinivas, stationed at Samraksha shares her experience)
A Family from Koppal visited Bangalore. They came to the Samraksha day care for thalassemia, located in the premises of Rashtrotthana Parishat with Rakesh, a two-year-old child. At registration, his father told me that Rakesh is their second child and was diagnosed with thalassemia. He is on regular blood transfusions ever since.
Rakesh has an elder brother Ramesh who is 4-years-old and a younger sister Shweta. As a part of regular questionnaire, I asked them if they are doing fine.
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.
Sankalp India Foundation is committed to enabling cure for children suffering from thalassemia.