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International Thalassaemia Day is celebrated on May 8 every year to raise awareness amongst people concerned with decision and policy making, health care professionals, patients and their families and community at large about thalassaemia. It is prevalent in the Mediterranean area, the Middle East and Southeast Asia, and the Pacific.
The theme for 2018 International Thalassaemia Day is “Thalassaemia past, present and future: Documenting progress and patients’ needs worldwide”.
Thalassaemia is an inherited blood disorder (passed from parents to children through genes). It results when genes that are responsible for producing haemoglobin are damaged or absent. Haemoglobin is the protein in red blood cells that carries oxygen to the body organs and tissues. Due to damaged or insufficient haemoglobin; a large numbers of red blood cells are destroyed and leads to anemia.
There are two types of thalassaemia: alpha thalassemia and beta-thalassemia. Both alpha and beta thalassaemia may be found in two forms-
- Thalassaemia major: In this type of disease, faulty genes are received from both parents. People with this disease may have severe anaemia, slowed growth and delayed puberty, and problems with the spleen, liver, heart, or bones. Symptoms usually appear during the first two years of life.
- Thalassaemia minor: People with this form of the disorder are carriers of the disease. Most of the time, they do not have symptoms. Thalassaemia minor occurs when faulty genes are received from one parent.
Thalassaemia can be diagnosed by blood tests. It is a treatable disorder that can be managed with blood transfusions and chelation therapy. Some children can be cured by bone marrow transplant.
It is difficult to prevent thalassaemia; as disorder is passed from parents to children, however in individuals and families with a diagnosis and/or risk of occurrence of an inherited disorder genetic counseling and prenatal diagnosis may be done.
Thalassaemia is now no longer a fatal disease of childhood; evidence indicates that persons with thalassaemia can lead a long and productive life, integrate and contribute to society with proper care and treatment.
Health activities related to thalassaemia in India:
- Rashtriya Bal Swasthya Karyakrama (RBSK) under National Health Mission provides early detection and treatment of children suffering from genetic disorders include thalassaemia.
- Facilities for medical checkup before marriage are available at various government health centres.
- Patients suffering from thalassaemia, (haemophilia or sickle cell anaemia) are provided blood free of cost as directed by the national blood transfusion council under National AIDS Control Organization (NACO).
- Disability due to thalassaemia is included in “The Rights of Persons with Disabilities Bill – 2016″ by the Ministry of Social Justice & Empowerment, Government of India.
- Several non-governmental organizations (NGO) like ‘Thalassemics India’ are working to help deal with Thalassaemia in India by launching projects like “Helping Hands”. .
