THALASSEMIA - SCI & TECH

News: Govt to start country-wide screening for thalassemia

 

What's in the news?

       The Union government will soon launch a national mission to tackle thalassemia - beginning with a country-wide screening exercise, wherever required.

       This will be modelled on the screening programme for sickle-cell disease, currently under way.

 

Key takeaways:

       Thalassemia, like sickle-cell disease, is a genetically transmitted blood disorder, with doctors around the country reporting around 10,000-12,000 children born with the disease every year.

 

Thalassemia:

       Thalassemia syndrome is an inherited blood disorder that causes the body to have less hemoglobin than normal.

       Haemoglobin is a protein molecule found in red blood cells that transports oxygen.

 

Is it an heritable disease?

       It is an inherited disease which is mainly caused due to the abnormal haemoglobin synthesis.

       It is transferred by one of the parents who is a carrier of this disease due to either deletion of particular key gene fragments or a genetic mutation.

 

Types of Thalassemia:

1. Thalassemia Minor:

       One of the father’s and mother’s hemoglobin genes are passed down during conception in Thalassemia minor.

       Carriers or minor Thalassemia are people who have a trait of Thalassemia in one gene.

       Thalassemia minor isn’t an illness and they have just gentle pallor.

2. Thalassemia Major:

       This is the most serious type of Thalassemia. When a child inherits two mutated genes, one from each parent, this happens.

       Within the first year of life, patients with thalassemia major experience the symptoms of severe anemia.

       They are extremely susceptible to iron overload and other complications and require regular transfusions or a bone marrow transplant to survive.

 

Symptoms:

       Bone deformities, especially in the face

       Dark urine

       Delayed growth and development

       Excessive tiredness and fatigue

       Yellow or pale skin

 

Impact:

       The disorder results in excessive destruction of red blood cells, which leads to anaemia.

       Anaemia is a condition in which the number of red blood cells or haemoglobin is lower than usual.

 

Treatment:

       Mild thalassemia requires no treatment, but acute thalassemia might require regular blood transfusions.

 

Government Measures:

1. Rights of Persons with Disabilities Act 2016:

       Thalassemia was recognized as a benchmark disability.

2. Thalassemia Bal Sewa Yojana (TBSY):

       Coal India Limited, under the auspices of the MoH&FW, is implementing TBSY (since 2017) as part of its CSR initiative to support the treatment of children affected by Thalassemia and Aplastic Anaemia.

       The initiative provides financial assistance for a package cost of 10 lakhs per Hematopoietic Stem Cell Transplant (HSCT) directly transferred from CIL to the institutions performing HSCT.

3. National Mission to tackle Thalassemia:

       The Union government will soon launch the mission with a country-wide screening exercise.