Christ College in Pune and online blood stem cell donor database DATRI will collaborate to raise awareness of blood disorders such as blood cancers and thalassemia which require blood stem cell transplants. “There are large [numbers] of patients suffering from blood cancer and thalassemia major among others for which the last resort is blood stem […]
Thalassemia
Disease profile: Thalassemia
India is considered to be the world capital for thalassemia. Thalassemia is a genetically inherited disease caused by four defective genes responsible for the formation of the globin molecule. This molecule is a part of haemoglobin, the aspect of the blood that is responsible for the transport of oxygen. Due to the mechanism by which […]
A father’s fifteen-year fight for a drug for his daughter
After fifteen years, a father has won a legal battle over medical expenses he paid to treat his daughter’s genetic condition. The Gujarat High Court has ruled in favour of Harshadkumar Pandya, an assistant teacher in Rajpipla, whose daughter was born with Silver-Russell syndrome, a form of dwarfism. Fifteen years back, on the advice of […]
Parents fight back against thalassemia benefit cuts
Parents of children affected with thalassemia in Telangana have hit back at a new policy reducing health benefits for families battling the disease. Thalassemia is a genetically inherited blood disorder. With between 10,000 and 12,000 children are born with the disease every year, India is believed to be home to forty million people who l […]
Screening for blood disorders proposed in bill
The Union Health Ministry has created a draft policy that could help to identify hemoglobinopathies, thalassemia and sickle cell disease. With sickle cell anaemia reaching prevalences of up to 35 percent in some communities, such a programme could identify many unaware of their status and who go without treatment as a result. Titled ‘Prevention and […]
100,000 thalassemia deaths before the age of twenty
India is home to more than 40 million people who test positive for thalassemia. Over 100,000 of these individuals will die before the age of twenty. Many of these deaths stem from a lack of access to treatment. Many individuals will never even be aware of the genetically inherited disease. The condition involves up to […]
Gujarat: Leading the fight against thalassemia
Gujarat is expanding a number of prevention policies with the aim of making the state thalassemia free. Foremost among the proposed policies is the intention to make thalassemia testing mandatory for everyone, with a focus on testing women before they give birth. India is considered to be the world’s capital for thalassemia cases, with 10,000 […]
World Thalassemia Day
India is considered to be the world capital for thalassemia cases. Every year another 10,000 children are born with the condition. Despite this, as of World Thalassemia Day – May 8th – there is no policy at the national level aimed at preventing or controlling the spread of the disease. Thalassemia is a genetically inherited […]