Every year, World Haemophilia Day is observed on April 17 to raise awareness about the rare blood disorder and help those suffering from it lead a better life.
The day was first commemorated by the World Federation of Haemophilia (WFH) in 1989 in remembrance of Frank Schnabel, who was born on April 17, 1942, and spent his entire life working to make the lives of those who were affected by this ailment better.
The theme for this year is “Access for All: Prevention of Bleeds as the Global Standard of Care,” and the goal is to persuade policymakers and governments to enhance access to care with a particular emphasis on better bleeding control.
What is haemophilia?
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 being 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 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.
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