World Thalassemia Day is a global healthcare event commemorated every year on May 8th to raise awareness about the condition among the local public and policymakers, apart from supporting and strengthening the morale of the victims who have battled for years with this fatal disease.
On this day, many local and international organisations, patient associations, public authorities, and healthcare professionals gather together to promote the importance of prenatal screening, counselling, prevention, management, or treatment of thalassemia in a patient-centred manner.
Thalassaemia is an inherited (genetically transmitted) autosomal recessive disorder acquired from parents (either or both). It affects the red blood cells due to a genetic mutation, leading to the depletion of haemoglobin's alpha and/or beta-globin chains. This results in low production of red blood cells and a lack of oxygenated blood supply to the body parts (anaemia). More than one lakh patients in India are thalassemia victims, with 40 lakh carriers.
Thalassemia affects 56,000 pregnancies worldwide, of which 30,000 have thalassemia major, and most of these patients were born in poor or underdeveloped nations. The treatment for major thalassemia can be exceedingly expensive and may involve stem cell transplants, continual blood transfusions, and chelation therapy. It is, therefore, essential to prevent congenital defects (thalassemia) before birth rather than keep trying to treat the condition after birth.
Prenatal screening can aid in identifying the condition of thalassemia at the foetal stage, and its awareness among local people plays a pivotal role in controlling the thalassemia numbers. World Thalassemia Day can be one of the opportunistic platforms where several private and governmental organisations carry out public education and healthcare campaigns for pregnant women, including genetic screening, counselling, and prenatal diagnosis. In addition, on this day, policymakers might plan or implement new strategies/policies for thalassemia victims, including free blood transfusions or providing financial assistance.
This year, 2024, the World Thalassemia Day Theme is “Empowering Lives, Embracing Progress: Equitable and Accessible Thalassaemia Treatment for All”. The theme emphasizes the commitment to ensure that advances in treatment and care are available to everyone affected by thalassaemia, regardless of their economic or geographic constraints.
Year By Year Themes for World Thalassemia Day
The first World Thalassemia Day, or International Thalassemia Day, was declared on May 8, 1994, by Panos Englezos, the president and founder of the Thalassemia International Federation (TIF). In honour of his (Panos Englezos) son George and the numerous thalassemia patients who battled this disease, Panos Englezos established this day.
The screening procedures include prenatal testing, done before the baby is born. The following tests are used to assess the presence of thalassemia:
Although thalassemia cannot be prevented, only the following measures can reduce the risk of having thalassemia in newborns.
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