World Haemophilia Day

• 18 Apr 2022

For Prelims: World Haemophilia Day, World Federation of Haemophilia.

For Mains: Haemophilia and its treatment, Health.

Why in News?

World Haemophilia day is celebrated on 17^th April every year, aiming to increase awareness about haemophilia and other inherited bleeding disorders.

• The day is celebrated in the honour of Frank Schnabel, founder of the World Federation of Haemophilia (WHF).
• This year's (2022) theme is "Access for All: Partnership. Policy. Progress. Engaging your government, integrating inherited bleeding disorders into national policy".

What is Haemophilia?

• About:
  • Haemophilia is a medical condition, mostly inherited, in which the ability of blood to clot is severely reduced, so that even a minor injury can cause severe bleeding.
    • Haemophilia is caused by a mutation or change, in one of the genes, that provides instructions for making the clotting factor proteins needed to form a blood clot.
    • This change or mutation can prevent the clotting protein from working properly or to be missing altogether. These genes are located on the X chromosome.
  • Because of the genetics involved in the way the sex of a child is determined, men are more vulnerable to haemophilia than women.
  • It is quite a rare disease, about 1 in 10,000 people are born with it.
• Types:
  • The most common type of Haemophilia is called Haemophilia A. This means the person does not have enough clotting factor VIII (factor eight).
  • Haemophilia B is less common. A person with Haemophilia B does not have enough factor IX (factor nine).
    • Haemophilia A, occurs in about 1 in 5,000 births, while Haemophilia B is even rarer at about 1 in about 20,000 births.
• Symptoms:
  • Big bruises.
  • Bleeding into muscles and joints.
  • Spontaneous bleeding (sudden bleeding inside the body for no clear reason).
  • Prolonged bleeding after getting a cut, removing a tooth, or having surgery.
• Treatment:
  • The main treatment for Haemophilia is Replacement Therapy.
  • Concentrates of clotting factor VIII (for Haemophilia A) or clotting factor IX (for Haemophilia B) are slowly dripped or injected into a vein. These infusions help replace the clotting factor that is missing or low.

What is the Indian Scenario of Haemophilia?

• According to the World Federation of Haemophilia’s Annual Global Survey 2017, there were over 1.96 lakh persons living with haemophilia across the world in 2017.
• In the country-wise data, India emerges with the highest count at nearly 19,000.
• It is estimated that 80% cases go unregistered, so that the actual count is close to 2 lakh.

What is the World Federation of Haemophilia (WFH)?

• It is an international not-for-profit organization that was established in 1963.
• It is a global network of patient organizations in 140 countries and has official recognition from the World Health Organization.
• Its mission is to improve and sustain care for people with inherited bleeding disorders around the world.

Source: IE