World Thalassemia Day is a worldwide health observance held annually on May 8 to educate the general public and policymakers about the disease and boost the spirits of those who have endured this life-threatening illness for an extended period.This occasion brings together a range of local and global institutions, patient groups, public officials, and healthcare experts to raise awareness of the significance of patient-focused prenatal screening, counselling, prevention, management, and treatment of thalassemia.Why is World Thalassemia Day importantThalassemia is an autosomal recessive genetic disorder inherited from one or both parents, causing a mutation that results in a depletion of alpha and/or beta-globin chains in the haemoglobin of red blood cells. This directs to low production of red blood cells and a lack of oxygenated blood supply, resulting in anaemia. In India, more than 100,000 people are affected by thalassemia, with 4 million carriers.Globally, thalassemia affects 56,000 pregnancies, with 30,000 resulting in thalassemia major, and most patients are from low-income or underdeveloped countries. The treatment for thalassemia major can be very costly, involving stem cell transplants, ongoing blood transfusions, and chelation therapy. Thus, preventing thalassemia congenital defects before birth is crucial through prenatal screening, counselling, and diagnosis rather than relying on post-birth treatment.World Thalassemia Day provides a significant opportunity for private and government organisations to conduct public education and healthcare campaigns targeting pregnant women, including genetic screening and prenatal diagnosis. Policymakers can also utilise this day to develop or implement strategies for thalassemia victims, such as providing free blood transfusions or financial assistance. The awareness of thalassemia among local people is critical in controlling the number of thalassemia cases.Today is #InternationalThalassaemiaDay! 🙌Today we unite the global #thalassaemia community.Today we raise #awareness.Today we call for #fairness.Today we inspire #change.Because together we are stronger! 💪 🔛 https://t.co/nItmRrTrIU#BeAwareShareCare #ITD2023 #8May pic.twitter.com/TYlLgbV7s0— TIF (@thalassaemiaTIF) May 8, 2023The theme of World Thalassemia Day 2023The World Thalassemia Day Theme for 2023 is “Be Aware. Share. Care: Strengthening Education to Bridge the Thalassaemia Care Gap.” This theme builds on last years “Be Aware. Share. Care” initiative. It emphasises the need to improve access to quality care and education to increase disease awareness, prenatal screening, and symptom management. The objective is to increase disease knowledge and improve the morale of thalassemia patients, particularly in rural areas.Over the years, the World Thalassemia Day Themes have focused on various aspects of thalassemia care. In 2022, the theme was “Be Aware. Share. Care: Working with the global community to improve thalassemia knowledge.” The objective was to bring together the global community to improve knowledge about thalassemia. In 2021, the theme was “Addressing Health Inequalities Across the Global Thalassaemia Community,” highlighting the need for universal access to quality healthcare services to build bridges with and for patients.In 2020, the theme was “The dawning of a new era for thalassaemia: Time for a global effort to make novel therapies accessible and affordable to patients,” focusing on the need to make novel therapies accessible and affordable to thalassemia patients worldwide. The 2019 theme was “Universal access to quality thalassaemia healthcare services: Building bridges with and for patients,” stressing the need for universal access to quality healthcare services to build bridges with and for patients. In 2018, the theme was “Thalassaemia Past, present and Future: Country Practices, progress and growing recognition of Patients Rights,” highlighting the countrys practices, progress, and recognition of patients rights.The World Thalassemia Day themes focus on improving thalassemia care by addressing various aspects of the disease, including knowledge, access to care, and recognition of patients rights. These themes provide a platform for private and public organisations to raise awareness, provide education, and implement policies that support thalassemia patients worldwide.History of World Thalassemia DayPanos Englezos, the founder and president of the Thalassemia International Federation (TIF), declared May 8, 1994, the first World Thalassemia Day, also known as International Thalassemia Day. Englezos established the day in memory of his son George, who had thalassemia, and as a tribute to all those who have suffered from this disease.#InternationalThalassaemiaDay festivities continue to amaze & inspire us! 🎈The #thalassaemia community has come out in force to help their fellow #patients, #friends & #family through their activities.Take a peek at what is going on right now in the 🌏#ITD2023 👇 👇 pic.twitter.com/Fk6i5z7Hdn— TIF (@thalassaemiaTIF) May 8, 2023Screening and prevention of ThalassemiaPrenatal testing is utilised to screen for thalassemia, which involves the following tests: chorionic villus sampling and amniocentesis. Chorionic villus sampling is typically performed during the 11th to 14th weeks of pregnancy, where a small piece of placental tissue is collected using a fine needle inserted through the mothers abdomen for further examination. On the other hand, amniocentesis is usually conducted around the 16th week of pregnancy, in which a small sample of the fluid surrounding the fetus is extracted by inserting a thin needle through the mothers stomach into the uterus. The fluid contains some of the infants cells, which can be evaluated to screen for thalassemia.While thalassemia cannot be avoided, there are ways to minimise the chances of having a newborn with the condition. These measures include performing genetic testing on the parents to determine whether they carry the thalassemia gene, prenatal screening to detect thalassemia during pregnancy, preimplantation genetic diagnosis to identify the presence of thalassemia in embryos before implantation, and educating the public about thalassemia to increase awareness and understanding.
