World Haemophilia Day (WHD) is celebrated on April 17 each year to raise awareness about hemophilia and other inherited bleeding disorders. It is an initiative of ‘World Federation of Haemophilia’ and this year it is 28th WHD.
The theme of WHD 2018 is ‘Sharing knowledge makes us stronger’.
WHD 2018 provides an opportunity to focus on the importance of sharing knowledge about the disorder and access to care and treatment; so that family, friends, colleagues, and caregivers can work together to provide support to persons living with an inherited bleeding disorder.
Haemophilia is an inherited condition that causes bleeding for a long time after injury or surgery and painful swelling of the joints either after injury or even without injury. ("Inherited” means that the disease is passed from parents to children through their genes). Haemophilia is the commonest X-linked disorder affecting approximately 1 in 10,000 male births; whereas women act as carriers of haemophalia.
Types of haemophilia
Haemophilia A – It is more common type of haemophilia. It is due to deficiency of clotting factor VIII (factor eight).
Haemophilia B- It is less common, only about 20% of people with haemophilia have haemophilia B. There is a deficiency of clotting factor IX (factor nine) in haemophilia B.
Who is a carrier?
A carrier of haemophilia is a female who has an abnormal X chromosome carrying the hemophilia gene. One of her two X chromosomes has a mutation of the factor VIII or factor IX gene, resulting in decreased levels of clotting factor VIII or IX, respectively.
Most carrier women do not show any symptoms of bleeding characteristic of hemophilia. But few with low levels of factor VIII or factor IX activity may face some bleeding problem at the time of surgery or have some other symptoms like excessive or extensive menstrual bleeding period, blue patches on the body.
Prevention of Haemophilia: Carrier Detection and Prenatal Diagnosis:
When there is a family history of haemophilia, it is now possible to identify females who carry the haemophilia gene. Women, who know they are carriers, or might be carriers, may have options for prenatal diagnosis to obtain information on fetal status.
According to National Blood Transfusion Council under National Aids Control Organization (NACO) guidelines to all state/UTs administration patients suffering from thalassemia, sickle cell anemia and haemophilia should be provided blood free of cost.
The Rashtriya Bal Swasthya Karyakarama (RBSK) launched under the National Health Mission (NHM), provides early detection and treatment of children suffering from genetic disorders.
Details about haemophilia can be seen at www.nhp.gov.in