Blogs

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?

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. First it leads to massive bone marrow expansion, unusual organs become involved in attempting to make blood cellular components, the absorption of iron from the food intake increases and consequently there is severe organ damage.

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. Zwan family charities, Kabul decided to help the family and approached Dr Lawrence Faulkner for help with the transplantation.

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. Though they did come for the follow-up meetings, the expression on their face did not suggest that they were willing to go for the transplant.

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?

How to we setup an environment which enables everybody involved to achieve personal and professional excellence?

A friend in need is a friend indeed. Information made available when required the most is often invaluable. Helplines are meant and designed to serve this purpose. Our social structure often provides helplines for a lot of prevalent problems. 10 years ago it was a surprise for our little team that there is no helpline to help in search of blood. It was on September 13 2006 that the statewide helpline for blood in Karnataka took flight. Today it serves as a lifeline to thousands of patients every month.