Thalassemia Prevention, Management and Cure

AHMEDABAD :   How Thalassemia major is a natio

In 2013, one morning a few weeks after the new day care cent with Rashtrotthana Parishat started, a 24-year-old girl was brought into the day care supported by 2 people. She could not walk and her skin tone seemed abnormal - thanks to the heavy iron overload.

The next edition of the Sankalp-Cure2Children Network meeting for BMT was organised on 4&5 June 2019 at People Tree Hospitals, Bangalore. The two day meeting held every six months is an opportunity for our transplant teams to get together and brainstorm - contributing to the fine outcomes. 

Thanks to the generous support from DKMS, HLA typing which usually costs a significant amount is made very affordable for several families in India. Through their support, Sankalp has been actively identifying candidates for BMT across the country. Over the last 3 months, nearly 500 HLA samples have been collected. Here is a snapshot of HLA typing events held at different places.

As part of the continuous learning initiatives adopted by Sankalp, a 2 day meeting for coordinators, nursing staff and doctors from the multiple thalassemia day care centres where Sankalp is involved was organized in Bangalore on the 23rd and 24th of January 2019

Ahmedabad Inauguration

Prolonged blood transfusion therapy and anemia can cause cardiac problems. Cardiac problems contribute significantly to mortality and poor quality of life for thalassemia patients. Timely intervention can help prevent and manage cardiac complications and save the patient and the family from suffering and huge financial burden.Annual cardiac screening has been prescribed for all children with thalassemia major above the age of 12 years.

Last month we had 205 patient visits with 276 transfusions at Indira Gandhi Institute of Child Health. The average pre-transfusion hemoglobin was 8.3gm/dl and the estimated post transfusion hemoglobin was 12.1 gm/dl. At Samraksha we had 164 patient visits with 205 transfusions. The average pre-transfusion hemoglobin was 8.7gm/dl while the estimated post transfusion hemoglobin was 12.3 gm/dl.

Bone marrow transplantation celebrated the completion of 43 years this year[1]. In last four decades BMT has established itself as the only definitive cure for a number of blood disorders. In India, the BMT program is 30 years old and the first transplant dates back to 1983 which was done at Tata Memorial Hospital, Mumbai[2]. Over the last two decades the treatment protocols across the globe have matured and the survival rates of people undertaking transplants has substantially improved[3,4].

On 19th February 2015 a group of people with very high interest in improving care and management for thalassemia came together in a room to explore the next steps for thalassemia management.

The intention was to share and to learn in an environment which maximizes learning and fosters cooperation.

The participants were

Hope is a good thing - may be the best of things..

Over last few months we have offered free HLA typing to 160 families in Karnataka,Maharashtra and Telangana.