On 8th May 1994, Thalassemia International Federation (TIF) observed World Thalassemia Day in memory of George Englezos. George was the son of the TIF founder, who lost his life due to thalassemia. Thalassemia as a disorder and its advocacy around all sectors, such as preventative awareness, healthcare, education, livelihood, and early interventions, have evolved dramatically. In India, thalassemia, along with two other blood disorders, was recognised as a benchmark disability in the Rights of Persons with Disabilities Act, of 2016. This brought a landmark shift in recognition and advocacy for thalassemia that went beyond the health sector and preventative awareness. In the present context, thalassemia and other blood disorders are becoming part of the invisible disability discourse.
Understanding Thalassemia
A large section of the population doesn’t understand thalassemia. In simple terms, thalassemia is a genetic-blood disorder that requires people to have regular blood transfusions mostly throughout the span of their life. However, it gets increasingly complex as we get into the specifics of the disorder. Thalassemia is part of a group of disorders called hemoglobinopathies. Hemoglobinopathies are a group of disorders that are passed down through families (inherited) in which there is abnormal production or structure of haemoglobin molecules. Thalassemia, Hemophilia and Sickle Cell Disorder all come under the umbrella of hemoglobinopathies.
