On May 8th, 1994, the Thalassemia International Federation (TIF) established World Thalassemia Day in memory of George Englezos, the son of TIF’s founder, who tragically lost his life to thalassemia. Over the years, the understanding of thalassemia as a disorder and the advocacy efforts surrounding it have evolved dramatically, encompassing various sectors such as preventative awareness, healthcare, education, livelihood, and early interventions. Today, thalassemia and other blood disorders are increasingly being recognized as part of the invisible disability discourse.
In India, a significant milestone was achieved for thalassemia advocacy in 2016 when it, along with two other blood disorders, was recognized as a benchmark disability in the Rights of Persons with Disabilities Act. This recognition marked a profound shift in how thalassemia was perceived, extending beyond the realm of health to encompass broader social and legal aspects. Thalassemia advocacy efforts in India began to focus not only on raising awareness about the disorder but also on ensuring equal rights, access to healthcare, education, and livelihood opportunities for individuals affected by thalassemia.
To understand thalassemia in simple terms, it is a genetic blood disorder that requires individuals to undergo regular blood transfusions throughout their lives. However, the disorder becomes increasingly complex when delving into its specifics. Thalassemia belongs to a group of disorders known as hemoglobinopathies, which are inherited conditions characterized by abnormal production or structure of hemoglobin molecules. Hemoglobin is a protein responsible for carrying oxygen in red blood cells. Alongside thalassemia, other well-known hemoglobinopathies include Hemophilia and Sickle Cell Disorder.
Thalassemia, specifically, affects the production of hemoglobin, resulting in the body’s inability to produce sufficient healthy red blood cells. As a result, individuals with thalassemia often experience anemia, fatigue, and other health complications. Regular blood transfusions are necessary to provide healthy red blood cells and alleviate symptoms. However, these transfusions present their own set of challenges, including the risk of iron overload, which requires additional medical management.
In recent years, there has been a growing realization that thalassemia and other blood disorders fall within the purview of invisible disabilities. Unlike visible disabilities that are immediately apparent, such as physical impairments, invisible disabilities are not readily observable but can significantly impact an individual’s daily life and functioning. Thalassemia, with its lifelong treatment regimen and associated complications, can result in various challenges that are not immediately apparent to others.
Advocacy efforts surrounding thalassemia have aimed to raise awareness about the invisible nature of the disorder, dispel misconceptions, and promote inclusivity and support for individuals with thalassemia. This involves not only educating the general public but also working with policymakers to ensure the inclusion of thalassemia in disability frameworks and the provision of necessary support services.
World Thalassemia Day serves as a reminder of the progress made in understanding and advocating for thalassemia and other blood disorders. The recognition of thalassemia as a benchmark disability in India’s disability act has paved the way for comprehensive support and rights for individuals living with the condition. By increasing awareness, fostering inclusivity, and promoting understanding of the invisible nature of thalassemia, we can work towards a more inclusive society that supports the needs and rights of individuals with this complex blood disorder.