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WORLD HAEMOPHILIA DAY

What’s in news?

  • World Haemophilia Day, celebrated on April 17, aims to increase awareness about inherited bleeding disorders.
  • Haemophilia patients in the region still have to face a number of challenges with regard to treatment.

Key Data’s:

  • With nearly two lakh cases, India is estimated to have the second highest number of haemophilia patients in the world.
  • World Haemophilia Day, celebrated on April 17 every year, aims to increase awareness about haemophilia and other inherited bleeding disorders. The day also marks the birth anniversary of Frank Schnabel, founder of World Federation of Haemophilia (WHF).
  • Theme’19: Reaching out – connect to your community.
  • Moreover, there is a major lack of haemophilia in India. It is important that parents get timely information about this lifelong disorder so that they can get the best help for their children and handle their lives in a better way when they are well aware of the condition, including the impact of disease on the lives of individuals. Below are some important facts you must know about haemophilia.
  • there is an erratic supply of medicines (for blood clotting  actors 8 and 9) which are required for treatment, high cost of treatment owing to the unavailability of free services with the Haemophilia Society of India (HSI) Visakhapatnam chapter and government hospitals also contribute to the lack of treatment options.
  • Unavailability of haematologists in the state, a lack of effective alternate treatment, lack of awareness especially among rural and tribal people about the blood disorder result in patients remaining unregistered.
  • Haemepholia tends to affect men more than women as the gene can be passed from mother to son. It is estimated that 1 in every 5,000 males is born with this condition.

Haemophilia:

  • Haemophilia is a rare hereditary disorder in which the blood does not clot properly.
  • This means people with this condition bleed for longer than usual as they lack a clotting factor, which works with platelets to cease bleeding at the site of an injury.
  • This condition is usually inherited and mostly affects men.
  • According to WFH, about 1 in 10,000 people are born with the bleeding disorder.

Types of Hemophilia

Haemophilia exists in two forms:

  1. Hemophilia A:It is caused specifically by a mutation in the Factor VIII gene on the X chromosome.
  2. Hemophilia B:This is caused by a mutation in the Factor IX gene on the X chromosome.
  3. Hemophilia C:  is a mild form of the disorder that’s caused by a deficiency of factor XI.

Symptoms: A severe headache, vomiting, neck pain, sudden weakness, blurred or doubled vision, confusion, loss of coordination and balance, extreme sleepiness, convulsions, etc.

https://www.iasipstnpsc.in/upsc-rashtriya-arogya-nidhi-ran/

https://www.timesnownews.com/health/article/world-haemophilia-day-2019-how-common-is-haemophilia-8-facts-you-must-know-about-bleeding-disorders/401264

https://timesofindia.indiatimes.com/city/visakhapatnam/haemophilia-patients-still-struggle-to-find-treatment/articleshow/68912698.cms

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