The book of Thalassemia International Federation’s guidelines on the management of transfusion dependant thalassemia is an essential resource for anyone involved in care giving for patients suffering from thalassemia. The latest edition has been released recently and is available for viewing and download from TIF’s website at http://www.thalassaemia.org.cy.
On November 14, 2011 Sankalp's India foundation supported the first thalassemia day center at Indira Gandhi Institute of Child Health, Bangalore. Cerebrating 3 years of fight against thalassemia.
Sankalp is committed to the cause of ensuring no one dies due to lack of blood. We follow high standards of quality monitoring. We realized that we were receiving unusually high no of repeated blood requests from a ward in a Govt. Hospital. Additionally, the patients for whom blood was required were also the same. In order to understand the situation better, the volunteers visited that ward in 2010. They were confronted with children who had hemoglobin of 3-6 gm/dl. Someone explained to the volunteers that the children were suffering from thalassemia.
16 April 2014, Mumbai
Sankalp India Foundation is committed to improving the access to care and management for the children suffering from thalassemia. In order to ensure that each child walking into one of the centers supported by us gets adequate (if not at par with the best) care and management, we constantly strive to find solution to the most pressing problems of the management of this disorder. Significant progress was made in the month of February to ensure proper management of thalassemia for the poorest of poor.
BANGALORE: "Though he is 21, he looks like a school boy. His growth is curtailed. There's no puberty-related growth. Some testosterone injections may help," said Dr Mamta V Manglani, an expert on thalassemia from Sion Hospital, Mumbai, looking at Kishore Kumar, a youth who had to discontinue his studies due to the disorder.
Recently doctors in Chennai have successfully transplanted a child with cancer from his mother's stem cells in the first Haploidentical transplant of the country. This news definitely brings cheers to the numerous families who are suffering from one or the other disorder that can be cured only by transplants. In India, it is extremely difficult to find a donor for a person who needs a transplant because of the very limited number of people who have enrolled so far in bone marrow registries.
Vikram is the first ever recipient of Haploidentical transplant in the country
When a 10-year-old has cancer, the boy’s family and doctors obviously have to do everything under the sun to find a cure for him. That is what parents and doctors of Vikram (name changed) of Madurai did. The hunt was on to find a 100 per cent matching donor, and when that failed, they found one that was a half match.
Vikram got a bone marrow transplant with a 50 per cent match from his mother. He survives to tell the tale today, speaking over a surgical mask.
I want to wish the little kids with thalassemia a happy day and I want to mean it too.
Today is the world thalassemia day. All over the world organisations and individuals are celebrating this occasion. It did occur to me that having been involved with thalassemia for 2 years now - maybe we too should celebrate this day.
14th November is celebrated as the children's day. We at Sankalp also mark it as the day when the Thalassemia Day Care Centre at Indira Gandhi Institute of Child Health was formally inaugurated. One year has passed since Sankalp India Foundation took a leap ahead and included management of thalassemia as one of the activities that the organisation was taking up. It has been an eventful journey. However, we must admit, this is no time for celebration.
7 November, Bangalore: Cure2Children, Italy and Sankalp India Foundation have come together to provide hope for the children suffering from thalassemia by offering HLA typing for the eligible families 'free of charge'. The HLA typing will enable the identification of the families who can opt for a permanent cure from thalassemia. 7th November, 2012 is going to be very special at the Thalassemia Day Care Centre. This is the day when 15 families who have one child suffering from thalassemia are being offered free HLA typing.
On a routine visit to the Thalassemia Day Care Centre at IGICH today I came across a distressing piece of news. The Doctors told me that one of the child who was coming to the day care for a few weeks now has been sent back home from the ICU. The look on the faces of the doctors told me that it was no reason to celebrate. Even as they acknowledged the little help that was offered to take care of the expenses on the medical tests that had to be outsourced, what followed was completely shocking!
