Sensitising Doctors, Pathologists and Policy Makers about Thalassaemia
Thalassaemia is the most commonly inherited blood disorder in the world, which impedes the body’s ability to produce red blood cells. A serious genetic disorder, Thalassaemia results in conditions such as mild or severe anaemia, iron overload, bone deformities and cardiovascular illness. In India, this disorder affects over 1,00,000 people and over 8,000 reported Thalassaemia births take place every year. This disorder affects more than 1,000 children in the city of Mumbai.
Treatment for this disorder is largely dependent on supportive care and lifelong Red Blood Cell Transfusions, which happen every 2-3 weeks. These frequent transfusions can cause a build-up of iron in the patient’s body, which has to be removed through a difficult and painful process called iron chelation.
Thalassaemia is a disorder that is passed on by parents who are carriers and so it can be prevented with the availability of early diagnostic facilities offering prenatal tests and family genetic studies. Lack of awareness about Thalassaemia carriers, Thalassaemia major, inheritance patterns, and the physical and psychological impact of the disorder among the public also contribute to the prevalence of this disorder.
The Narotam Sekhsaria Foundation supports Think Foundation in its efforts to improve the quality of lives of children suffering from Thalassaemia Major in Mumbai and to prevent incidents of this disorder in the long run.
The objective of this project is to sensitise doctors, pathologists and policy makers about Thalassaemia.
This endeavor includes sensitization of medical professionals about prevalence and risks of thalassemia and preventive measures to be taken up by them; lobbying with the government to include screening for thalassemia in the antenatal care protocol and the diagnostic centers to be vigilant about potential thalassemia patients and to offer them testing facilities.
Through the support provided by the Narotam Sekhsaria Foundation and Think Foundation, doctors are not only able to identify parents who are carriers of Thalassaemia , but also conduct prenatal tests to determine if the baby is at risk, as well as to initiate appropriate medical action.
With the support of the Narotam Sekhsaria Foundation, the Think Foundation liaisons with government bodies such as DGHS, NRHM and MSBTC to include Thalassaemia tests in the antenatal care of all expectant mothers.
This has enabled Think Foundation to sensitize the medical professionals, government and diagnostic centers about the significance of early screening and diagnosis of thalessemia. The project has longstanding impact on prevention and early detection of thalasemia.
Established in 2006, the Think Foundation is a not-for-profit organisation that organises blood donation drives, awareness campaigns and coordinates the availability and supply of blood units by networking with blood banks, or by identifying donors. Through their work, the Foundation aims to improve the quality of lives of children suffering from Thalassaemia Major. In the long run, the Foundation hopes to prevent the occurrence of this disorder altogether.