World Thalassaemia Day (WTD) is observed every year on May 8 globally, to create awareness about the disease and help thalassaemia patients to lead a normal life despite the burden of the disease. Due to the COVID-19 pandemic, World Thalassaemia Day 2020 will be celebrated through different online activities.
Theme for the year 2020: “The dawning of a new era for thalassaemia: Time for a global effort to make novel therapies accessible and affordable to patients”.Key Points:
i.History of the day: World Thalassaemia Day was established by the World Health Organization (WHO) and organized by the Thalassaemia International Federation (TIF). WTD has been observed since 1994.
ii.TIF organises many diverse activities for the International Thalassaemia Day, with the objective to draw the attention of general public, patient associations, public authorities, healthcare professionals and industry representatives to fuel discussions and promote actions on a particular theme related to the prevention, management or treatment of the disease in a patient-centred manner.
iii.About Thalassaemia: Thalassemia is an inherited blood disorder that causes your body to have less haemoglobin than normal.
iv.Haemoglobin is the protein in red blood cells that carries oxygen. Patients with thalassaemia suffer from anaemia due to low levels of haemoglobin.
v.If both parents are thalassemia carriers then there is a 25% chance of the baby having thalassemia major (the most severe kind of thalassemia). In India, each year, 10,000 babies are born with thalassemia.
vi.Symptoms of Thalassaemia: The symptoms of thalassaemia may vary according to the type and severity of the disease. Some common symptoms may include: weakness, Pale skin, Bone deformities, Dark urine, Constant fatigue, Slow growth, Abdominal swelling.
vii.Treatment: The few treatment options available for thalassaemia are Blood transfusion, Bone marrow transplant and Luspatercept.
viii.Luspatercept: Luspatercept is a new drug which has been approved by the FDA (Food and Drug Administration) for adult patients suffering from thalassemia. It is an injection given under the skin. In clinical trials, luspatercept has shown a reduction in the requirement of blood transfusion in 70% of thalassemia patients.
About Thalassaemia International Federation (TIF):
- The Thalassaemia International Federation (TIF) is a non-profit, non-governmental organisation founded in 1986 by a small group of patients and parents representing mainly National Thalassaemia Associations in Cyprus, Greece, UK (United Kingdom), USA (United States of America) and Italy.
- TIF was officially registered under Cyprus Company Law in 1987, and since 1996 it has worked in official relations with the World Health Organisation (WHO). The Federation currently represents a total of 232 members from 62 countries.
President– Mr Panos Englezos.
Executive Director– Dr Androulla Eleftheriou.