Sankalp Program for Thalassemia Cure

Since last year Sankalp India Foundation had been requesting the Government of Karnataka to come up with a comprehensive policy for support for thalassemia.

We were happy to have the visit of eminent global experts of transplantation for Sickle Cell Disease, Dr. Francoise Bernaudin and Dr. Mathieu Kuentz from the Referral Center for Sickle Cell Disease, CHIC, Creteil Hospital and the DrepaGreffe Association France from 27th February to 1st March 2017.

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.

A clinical trial is an important element of research in the field of medicine and science. Before any treatment protocol, or medicine or any practice related to the patient is brought into mainstream practice, it is essential that the trials have proved it's impact.

The meeting was organized with the intention of developing synergy between the various centers involved in the transplantation for thalassemia as part of the Sankalp-Cure2Children Thalassemia BMT Network. The following organizations were represented in the meeting:

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.

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.

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.

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.