International thalassemia day is observed every year on May 8, since 1994, declared by Thalassemia International Federation in the loving memory of George Englezos. George was a Scientist and son of the President of TIF, who suffered from Thalassemia.
Theme of International thalassemia day
0Theme of Year 2022 is: “Be aware, share, care: Working with the Global community as one to improve Thalassemia knowledge.”
Why is International Thalassemia day Observed?
The day is observed every year to recognize the struggle of patients suffering from Thalassemia, to raise awareness about the disease and its symptoms, and to honor the dedicated team of Medical staff and Scientists who are constantly working to bring new advancements to get rid of it.
What is Thalassemia?
It is a genetic blood disorder, inherited from the parents that impact the blood hemoglobin level and may cause anemia. Beta Thalassemia is considered as the main form of Thalassemia. Inheriting a copy of the faulty Beta Thalassemia Gene from both of the parents can cause it in the child. When both parents are carriers of faulty genes, the condition is known as the “Thalassemia trait”.
The symptoms are usually not known initially but they may become noticeable after a few months of birth or later in childhood or even in adulthood. People with Beta Thalassemia have high chances of Anemia hence they have to suffer conditions like too much Iron in the body due to regular blood transfusions to treat anemia, affecting heart, liver and hormone levels if left untreated.
Symptoms of Thalassemia
Feeling weakness, pale skin, bone deformities, dark urine, constant fatigue, slow growth, and abdominal pain are the known symptoms of Thalassemia.
Around 280 million people throughout the world are suffering from Thalassemia, out of which 4,39,000 have a severe form of the disease. This population generally belongs to the Mediterranean, India, Pakistan, Bangladesh, the Middle East, China, and Southeast Asia.
India statistics of Thalassemia
According to the study by ICMR, Thalassemia is the commonest genetic disorder in India. The prevalence of β-Thalassemia carrier varies from 1 to 17% in different population groups with an overall prevalence of 3-4%. It is estimated that almost 8,000 to 10,000 children are born with Thalassemia every year, and there are about 65,000- 67,000 β-thalassemia patients in India.
As per the report presented in Loksabha by the Minister of Health in March 2021, the Public Health and Hospitals being a state Subject, the primary responsibility of management of Thalassemia including initiation of schemes for thalassemia patients lies with the respective State Governments. However, under National Health Mission(NHM), support is being provided to States/UTs to strengthen their healthcare systemincluding support for prevention and management of Thalassemia at public healthcare facilities, including for low income patients, based on the proposals submitted by the States/UTs in their Programme Implementation Plans.
Under NHM, Comprehensive Guidelines on Prevention and Control of Hemoglobinopathies in India – Thalassemia & Sickle cell Disease and other variant Hemoglobins (2016) had been shared with States/UTs to assist the States for management of Haemoglobinopathies including Thalassemia.
Under NHM, 1,074 blood banks and 1,699 blood storages have been made operational, which provide blood services including packed red blood cells, free of cost including for Thalassemic patients. Further, 171 Integrated centers for Hemoglobinopathies & Haemophilia (ICHH) Centres have been established in District Hospitals in high prevalence areas of the country to provide treatment.
How to Take Care of
Thalassemia is one of the inherited disorders of red blood cells. Plan a proper diet, regular exercise, routine blood tests and keep in touch with your Doctor may help you to cope up with the condition.