World Thalassemia Day is celebrated on May 8 every year to commemorate Thalassemia victims and to encourage those who struggle to live with the disease.
The theme for 2021 World Thalassemia Day is “Addressing Health Inequalities Across the Global Thalassaemia Community”.
The president and founder of TIF, Panos Englezos, established International Thalassaemia Day in 1994. He created the day in memory of his son, George, who lost his life to thalassemia. Each year the TIF creates a special theme for the day.
This day is a commemoration day in honour of all patients suffering from thalassaemia and their parents who have never lost hope for life, despite the burden of their disease and also to all scientists who are doing hard work with dedication and trying to provide improved quality of life to people with thalassaemia across the globe.
- Thalassemia is a genetic hemoglobin disorder. Hemoglobin is the iron-rich protein found in red blood cells. The function of hemoglobin is to transport oxygen to the blood.
- A person with thalassemia has less than normal amounts of hemoglobin.
- It is an inherited blood disorder that passes from parents to children.
- There are several types of thalassemia disease and its treatment depends on their types and severity.
- Its impact may range from mild to severe and life-threatening also.
- This can make life very difficult, as it usually requires multiple blood transfusions.
- Some people with the disease need a blood transfusion every two weeks.
- This disease is most common with Mediterranean, South Asian, and African ancestry.
- Beginning at the age of t2 months a seven valent Conjugate Pneumococcal Vaccine should be given.
- At the age of 24 months, a 23-valent Conjugate Pneumococcal Vaccine booster should be given.
- Later, Pnuemovax booster should be considered every 5 to 10 years.
Thalassemia in India:
- Every year around 10,000 children are born with Thalassemia in India.
- The Thalassemia gene varies from 3% to 15% in northern India and 1% to 3% in southern India. Certain communities such as Lingayat in Karnataka, Koli’s and Agri’s in Maharashtra, Punjabis and Sindhis have higher carrier rate.
About Thalassemia Bal Sewa Yojana:
- The second phase of Thalassemia Bal Sewa Yojana was launched by the Ministry of Health and Family Welfare in October 2020.
- It aims to provide a one-time cure opportunity for Haemoglobinopathies like Thalassaemia and Sickle Cell Disease for patients who have a matched family donor.
- It has now been extended to include Aplastic Anemia patients.
- The Hematopoietic Stem Cell Transplantation (HSCT) programme was launched in 2017.
- It is funded by Coal India CSR (Corporate Social Responsibility).
About Sickle Cell Disease:
- It is an inherited disease caused by defects, called mutations, in the beta globin gene that helps make hemoglobin.
- The red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. The sickle cells die early, which causes a constant shortage of red blood cells.
World Sickle Cell Day:
- World Sickle Cell Day 2020 was observed to increase awareness about the Sickle Cell Disease (SCD) at the national level.
- The day is recognized by the United Nations and celebrated every year on 19th June.