Context:
World Thalassemia Day is a global healthcare event commemorated every year on May 8th to raise awareness about the condition among the local public and policymakers, apart from supporting and strengthening the morale of the victims who have battled for years with this fatal disease.
- This year the theme on World Thalassemia Day is “Be Aware. Share. Care: Strengthening Education to bridge the Thalassemia care gap
Relevance:
GS II- Health
Dimensions of the Article:
- What are ‘Rare diseases’?
- About Thalassemia
- Importance of preventive screening and awareness
What are ‘Rare diseases’?
A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.
Most rare diseases are genetic, and are present throughout a person’s entire life, even if symptoms do not immediately appear.
- Haemophilia,
- Thalassemia,
- Sickle-cell anaemia,
- Auto-immune diseases,
- Pompe disease,
- Hirschsprung disease,
- Gaucher’s disease,
- Cystic Fibrosis,
- Hemangiomas and
- Certain forms of muscular dystrophies
Are some of the most common rare diseases recorded in India.
About Thalassemia:
- Thalassemia is a genetic blood condition in which the body generates insufficient haemoglobin. Haemoglobin is a protein molecule found in red blood cells that transports oxygen. Anemia is caused by the severe loss of red blood cells caused by this illness.
- Anaemia is a condition in which the number of red blood cells or haemoglobin is lower than usual.
- It is a hereditary disorder that is caused mostly by faulty haemoglobin production. It is passed down by one of the parents who is a carrier of the disease due to a genetic mutation or deletion of specific critical gene segments.
- Parents are usually asymptomatic as carriers and there is a 25 per cent chance of passing it on to their children.
- Acute thalassemia may require regular blood transfusions, whereas mild thalassemia does not require therapy.
- Effects:
- It affects all organs of the body. It starts with the bone marrow being unable to produce adequate haemoglobin.
- The liver and spleen also come under pressure and overworked.
- Sometimes thalassemics experience facial bone deformities.
Importance of preventive screening and awareness:
- A person living with thalassemia has a life-long struggle.
- The cost of maintaining a child with Thalassemia Major is almost Rs 2 lakh per year.
- The rate of picking up a Thalassemia trait is 3-4 per cent. This means for every 100 people screened, there would be at least three to four people detected with the trait.
- Hence preventive screening is an important measure.
- Testing people for Thalassemia carrier status in society is very important to prevent the birth of a single Thalassemic child.
-Source: The Indian Express
