May 8 marks World Thalassaemia Day, which is a special day dedicated to raising awareness about a genetic disorder called Thalassaemia. This disorder causes the body to produce insufficient amounts of haemoglobin, which is essential for carrying oxygen in the blood. Individuals with Thalassaemia inherit this condition, and it results in reduced levels of oxygen-carrying proteins in their blood. The aim of World Thalassaemia Day is to increase understanding and knowledge about this blood disorder and show support for those who live with it.
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The theme for this year’s International Thalassaemia Day is “Strengthening Education to Bridge the Thalassaemia Care Gap.” The theme is aimed at enhancing the understanding and expertise of individuals affected by the disease, with the goal of narrowing the gap in thalassaemia care. The focus is on improving the skills and knowledge of patients to empower them to take control of their health and manage the condition more effectively.
World Thalassaemia Day holds significant importance as it is dedicated to raising awareness about a genetic blood disorder called Thalassaemia. The day serves as an opportunity to educate people about the disease, its causes, and symptoms, and to encourage the adoption of healthy lifestyles that can help prevent the onset of Thalassaemia. The day is also crucial in highlighting the challenges that individuals with Thalassaemia face and promoting the importance of providing them with access to appropriate care and support. Additionally, World Thalassaemia Day serves as a reminder to society about the need for continued research and development in the field of Thalassaemia treatment and management.
The Thalassaemia International Federation (TIF), a non-profit organization that represents individuals and families affected by Thalassaemia worldwide, established and organized the first World Thalassaemia Day in 1994. The TIF was founded in 1986 by Mr Panos Englezos, Thalassaemia patients, and their parents from the UK, USA, Greece, Italy, and Cyprus. The day was created in memory of Mr Panos’ son, George, who had passed away due to Thalassaemia. Since then, World Thalassaemia Day is observed annually on May 8th to raise awareness about Thalassaemia and its impact on individuals and families worldwide.
Thalassaemia is a genetic blood disorder that affects the production of haemoglobin, the protein that carries oxygen in the blood. Haemoglobin is made up of two types of proteins, alpha and beta globin. 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.
The severity of Thalassaemia depends on the specific genetic mutation and the number of genes affected. Individuals who inherit one mutated gene are carriers and do not usually exhibit symptoms of the disorder. However, those who inherit two mutated genes, one from each parent, will develop Thalassaemia and experience various symptoms, including fatigue, weakness, shortness of breath, pale skin, and jaundice.
Thalassaemia is most commonly found in populations from the Mediterranean, Middle East, and Southeast Asia. There is currently no cure for Thalassaemia, but treatment options include blood transfusions, bone marrow transplants, and gene therapy. Early diagnosis and management of Thalassaemia are essential to improve the quality of life of individuals with the disorder.
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