Special

Sankalp India Foundation, Bangalore, Think Foundation, Mumbai and We Care Trust, Mumbai collaborated with Kokilaben Dhirubhai Ambani Hospital,Mumbai and had started a Bone Marrow Transplantation Project at Mumbai for Thalassemia patients coming from financially poor background. The project was started in April 2016 and Karan Veer Singh from Think Foundation was the project coordinator. The first child who was transplanted was about to get discharged and the second child had got admitted. At this time we had a shocking news.

“Bulk transfer of blood between blood banks of all sectors permitted by NBTC” was published in the Volume 6 Issue 4 of Sankalp Patrika. The good news is that at least the State Government of Karnataka has accepted the guideline issues by NBTC in its totality in the Second Meeting of the Technical Expert Committee of KSBTC help on 11 March 2016. This is great news for the blood banks in the state.

by Dr Reshma Shrinivas, Medical Officer In-charge, Project Samrkasha Thalassemia Day Care, Rashtrotthana Parishat, Bangalore

On 1st March 2016, when 13 year old Viren(name changed) was brought to Samraksha for the very first time, he was carried by his father on his back. The staff was surprised looking at a 13 yr old being carried by his father. The father explained to us saying Viren cannot walk even a furlong distance.

"State level Consultation on Status of Thalassemia and Other Hemoglobinopthies in Karnataka" was organised by Sankalp India Foundation with the major thalassemia centers in Bangalore as co-hosts on 9th of March 2016 at Rashtrotthana Parishat, Bengaluru.

World bank data on maternal mortality shows that even in 2011-2015 we had 174 in every 100,000[1] women dying because of pregnancy related causes. We contribute to the highest number of maternal deaths globally and stand at the 127th position in the world on maternal mortality ratio.

23rd March Bangalore

With the support of DKMS Germany and Cure2Children, Italy, Sankalp India Foundation has been offering free HLA typing to patients from all over the country. Several of these patients find a match within their families. Once the match is found, starts the journey of screening and preparation for the transplantation.

By timely intervention we may save a lot of complications and transfusions.

In our blood donation drives these days we have begun to capture details of deferrals to analyze and assess the reasons in greater detail. But even before that there's one trend that is pretty obvious and quite disturbing. A huge percentage of women donors are unfortunately anemic leading to them being turned down.

An insight into the real problems that confront thalassemia management.

Since the beginning of this century, the availability of oral chelation therapy has enhanced to opportunity to improve overall survival and quality of life of patients suffering from thalassemia. However, are we adequately monitoring the overall survival associated with management of thalassemia? This is crucial because it may help identify the gaps in the delivery of healthcare to the patients.

The first bone marrow transplantation (BMT) for thalassemia was performed in 1980, since than over 4.000 have been done, so what do we know about people who have undergone BMT many years back?