Hematology Oncology Diseases and Cancer Care Information

World Thalassemia Day: Know the Risk, Get Tested, Save a Life

Hematology and Cancer Care

8 May 2023

8.0 mins

World Thalassemia Day 2025Work together to inspire change! Every year the 8th of May is observed as World Thalassemia Day, a special day dedicated to people battling thalassemia. This day aims to raise public awareness of the condition, encourage early diagnosis and treatment, and support research efforts to find a cure. This blog will take a peek at the significance of this day and how we can all work together to increase awareness and help individuals impacted by this difficult condition. WORLD THALASSAEMIA DAY 2025 THEME Better education for a better change! The International Thalassaemia Day 2025 theme emphasizes the liberating potential of education and its link to proper and effective care for this condition. Building on the success of last year's theme, the 2025 campaign, titled 'KNOW THE RISK, GET TESTED, SAVE A LIFE' - Strengthening Education to Bridge the Thalassaemia Care Gap' goes a step further by highlighting the need for improved access to quality, lifelong Thalassemia awareness for people living with the disorder and healthcare professionals involved in their care. IMPORTANCE OF WORLD THALASSEMIA DAY 2025 Thalassemia is a genetic blood disorder passed down through families in an autosomal recessive pattern, meaning it can be inherited from one or both parents. It disrupts the production of hemoglobin’s alpha and beta-globin chains, leading to a reduced number of healthy red blood cells and resulting in chronic anemia [https://www.mrmed.in/health-library/haematology/anemia-can-be-cured]. As of 2025, India is home to over 1 lakh thalassemia patients and nearly 4 crore carriers, making it a major public health concern. Treatment for thalassemia major, which includes regular blood transfusions, iron chelation therapy, and sometimes stem cell transplants is both lifelong and expensive. This is why preventing the birth of affected children through genetic counselling and screening has become a top priority. On World Thalassemia Day 2025, awareness campaigns and educational posters play a crucial role in informing the public about prevention, early detection, and treatment options. HISTORY OF WORLD THALASSEMIA DAY Panos Englezos, president and founder of the Thalassemia International Federation (TIF), established the inaugural World Thalassemia Day, or International Thalassemia Day, on the 8th of May, 1994. Panos Englezos founded this day in memory of his son George and the many thalassemia sufferers who battled the disease. THALASSEMIA IN INDIA Did you know? India continues to carry the highest burden of thalassemia globally [https://www.thehindu.com/sci-tech/health/what-is-thalassemia/article23811040.ece], with over 40 million carriers of the thalassemia gene. Each year, approximately 10,000 children are born with thalassemia major, a severe form of the disease where life expectancy, without consistent care, ranges between 20 to 30 years. As of 2025, recent data underscores the ongoing challenge—lack of awareness, inadequate screening, and limited access to safe blood transfusions contribute to the loss of thousands of lives annually. This World Thalassemia Day 2025, let’s take collective responsibility to raise awareness, support early diagnosis, and advocate for better care for those affected. WHAT IS THALASSEMIA? UNDERSTANDING THALASSEMIA VS ANEMIA Thalassemia is a chronic blood disorder [https://www.mrmed.in/health-library/haematology/type-of-blood-disease] that occurs due to the mutation of genes responsible for hemoglobin production. While both thalassemia and anemia involve low red blood cell counts and similar symptoms, they are different conditions. Thalassemia vs anemia lies primarily in the cause: Thalassemia is genetic and caused by a mutation in hemoglobin production, whereas anemia can be caused [https://www.mrmed.in/health-library/haematology/main-causes-iron-deficiency-anemia] by a variety of factors, such as iron deficiency, vitamin deficiencies, or chronic diseases. Thalassemia is inherited, meaning that children inherit the condition from their parents, while anemia can develop due to factors that are not always genetic. THALASSEMIA CAUSES Thalassemia occurs due to the inheritance of abnormal genes involved in hemoglobin production. Children are at high risk of developing thalassemia if both parents are carriers of thalassemia. Sometimes, your ancestry does play a role, and people of Southeast descent are susceptible to thalassemia. TYPES OF THALASSEMIA As said earlier, types of thalassemia [https://www.webmd.com/a-to-z-guides/what-is-thalassemia] have two proteins, i.e., alpha and beta proteins, are involved in making hemoglobin. If a person lacks either of the two proteins, the red blood cells fail to carry oxygen to other parts of the body and cause several complications. ALPHA THALASSEMIA Do you know? Four genetic copies are needed for the synthesis of alpha protein. Patients with alpha thalassemia have defects in the alpha protein of the hemoglobin. A person will become a carrier if inherited with one abnormal gene copy. A person who has inherited two abnormal copies may experience only mild symptoms. In some rare cases, a person can inherit more than two abnormal copies and may suffer from severe alpha thalassemia. BETA THALASSEMIA In contrast to alpha protein, only two genes are involved in beta-protein production. If any person has inherited one defective gene copy, they may have mild symptoms of beta-thalassemia, called thalassemia minor. If a person has inherited two defective copies, then that person is subjected to moderate to severe thalassemia symptoms, and this condition is named thalassemia major. SYMPTOMS OF THALASSEMIA * Facial bone deformities * Yellowish discoloration of the skin * Stunted growth * Inflammation of the spleen and liver * Fatigue * Breathing difficulty * Poor appetite * Anemia TREATMENT OPTIONS FOR TREATING THALASSEMIA * Blood transfusions: Periodic blood transfusions are required to prevent a sharp drop in hemoglobin count and improve patient survival. Patients with thalassemia require blood transfusions once in 2 to 3 weeks. * A bone marrow transplant can benefit children with thalassemia to lead a long, fulfilling life. Well, it depends on the availability of a suitably matched donor, and it is one of the treatment interventions to cure thalassemia. * Surgery, such as spleen removal, will be performed in some patients with chronic spleen inflammation. * Your doctor will prescribe supplements such as folic acid to prevent a drop in hemoglobin count. * Diet: It is recommended to consume leafy greens and legumes and follows a plant-based diet to prevent anemia and folate deficiency. It is better to avoid high-fat meat and foods that contain fortified iron because it can build up iron in your body. FAQS 1. What is thalassemia and how is it treated? Thalassemia is a genetic blood disorder that reduces hemoglobin production, leading to anemia. Treatment typically includes blood transfusions, iron chelation therapy, and in some cases, bone marrow transplants. 2. When is World Thalassemia Day celebrated? May 8th was chosen to commemorate George Englezos, the son of TIF’s founder, who passed away due to thalassemia. The day honors all patients, advocates for better healthcare, and spreads awareness to prevent new cases through education and screening. 3. How can thalassemia be prevented? Thalassemia prevention involves carrier screening and genetic counseling. If both partners are tested before marriage or conception, they can understand the risk of passing the disorder to their children and make informed decisions. 4. Is there a permanent cure for thalassemia? A bone marrow or stem cell transplant is the only known cure, but it is not suitable for all patients due to donor match issues and other risks. Gene therapy is under research and may offer future hope. 5. Is thalassemia common in India? Yes, India has one of the highest numbers of thalassemia cases globally, with over 100,000 patients and more than 10,000 new cases every year. Awareness and early detection remain crucial to controlling its spread. 6. How to prevent thalassemia in newborns ? Thalassemia in newborns can be prevented through carrier screening and genetic counseling for parents before conception. Prenatal testing, like chorionic villus sampling or amniocentesis, can also detect the condition early during pregnancy. 7. What is the theme for World Thalassemia Day 2025? The official theme for World Thalassemia Day 2025 is expected to be announced by the Thalassaemia International Federation (TIF) closer to the observance date. Each year’s theme focuses on improving patient care, promoting awareness, and supporting prevention strategies. 8. How often do thalassemia patients need blood transfusions? Patients with thalassemia major often require blood transfusions every 2–4 weeks to maintain healthy hemoglobin levels and prevent complications like severe anemia. THE BOTTOM LINE Donate blood and give a new lease of life. If you know that you are a carrier of the thalassemia gene, consult your doctor and have genetic counseling to prevent the thalassemia from running through your family. Sometimes, your doctor may also recommend in vitro fertilization methods to protect your baby from thalassemia disease. The death rate of children affected with thalassemia is growing due to a shortage of blood transfusions. So on this World Thalassemia Day 2025, let's all shower our care and love on all the needy thalassemia patients by donating blood, as they require frequent blood transfusions. READ ALSO 1. Know About Blood Infections - Types, Signs, Symptoms & Treatment [https://www.mrmed.in/health-library/haematology/blood-infections-types] REFERENCES 1. https://pubmed.ncbi.nlm.nih.gov/24765686/ [https://pubmed.ncbi.nlm.nih.gov/24765686/] 2. https://theiashub.com/upsc/world-thalassemia-day/ [https://theiashub.com/upsc/world-thalassemia-day/] 3. https://pmc.ncbi.nlm.nih.gov/articles/PMC3552345/ [https://pmc.ncbi.nlm.nih.gov/articles/PMC3552345/] 4. https://pmc.ncbi.nlm.nih.gov/articles/PMC7510249/ [https://pmc.ncbi.nlm.nih.gov/articles/PMC7510249/]

Dr. Vijayalakshmi