World Thalassaemia Day is observed on May 8 each year to raise awareness about Thalassaemia, a genetic blood disorder that reduces the production of haemoglobin. This protein is crucial for carrying oxygen in the blood, and individuals with Thalassaemia inherit the condition, resulting in reduced levels of oxygen-carrying proteins in their blood. The day aims to enhance the understanding and expertise of individuals affected by the disease, with a focus on improving their skills and knowledge to empower them to manage the condition more effectively.
This year’s theme is “Strengthening Education to Bridge the Thalassaemia Care Gap,” aimed at narrowing the gap in Thalassaemia care. The day is significant as it educates people about the disease, its causes, and symptoms, and encourages the adoption of healthy lifestyles to prevent the onset of Thalassaemia. It also highlights the challenges that individuals with Thalassaemia face and promotes the importance of providing them with access to appropriate care and support.
Thalassaemia is a genetic blood disorder that affects the production of haemoglobin. Individuals with Thalassaemia have a mutation in one or both of the genes responsible for producing alpha or beta globin, resulting in reduced or absent production of one or both types of globin. This leads to a shortage of haemoglobin, causing anaemia and other related complications.
There are two main types of Thalassaemia: alpha Thalassaemia and beta Thalassaemia. Alpha Thalassaemia occurs when there is a problem with the alpha-globin gene, and beta Thalassaemia occurs when there is a problem with the beta-globin gene. The severity of Thalassaemia depends on the specific genetic mutation and the number of genes affected.
Thalassaemia is most commonly found in populations from the Mediterranean, Middle East, and Southeast Asia. Treatment options include blood transfusions, bone marrow transplants, and gene therapy. There is currently no cure for Thalassaemia, but early diagnosis and management of the condition are essential to improve the quality of life of individuals with the disorder.
The Thalassaemia International Federation (TIF), a non-profit organization that represents individuals and families affected by Thalassaemia worldwide, established World Thalassaemia Day in 1994. The day was created in memory of Mr Panos Englezos’ son, George, who had passed away due to Thalassaemia. Since then, World Thalassaemia Day has been observed annually on May 8th to raise awareness about Thalassaemia and its impact on individuals and families worldwide.
