World Hemophilia 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 Hemophilia’ and April 17, 2022, marks the 32nd World Hemophilia Day.
The theme of this year event is “Access for All: Partnership. Policy. Progress. Engaging your government, integrating inherited bleeding disorders into national policy”. Its aim is to raise awareness and bringing hemophilia and other inherited bleeding disorders under consideration in national policy to make sustainable and equitable access to care and treatment.
What is Hemophilia?
Hemophilia 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). Hemophilia is the commonest X-linked disorder affecting approximately 1 in 10,000 male births; whereas women act as carriers of hemophilia.
Types of hemophilia
Who is a carrier?
A carrier of hemophilia 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 hemophilia, it is now possible to identify females who carry the hemophilia gene. Women, who know they are carriers, or might be carriers, may have options for prenatal diagnosis to obtain information on fetal status.
Initiatives to support inherited bleeding disorders by MoHFW, GOI:
Under National Health Mission, all states/ UTs have to provide blood services 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.
Digital Portal for Crowdfunding & Voluntary Donations for the treatment of patients of Rare Diseases is launched to facilitate voluntary donations in accordance with the mandate of the National Policy for Rare Diseases 2021. The Digital Portal may be accessed through https://rarediseases.nhp.gov.in/
Details about hemophilia can be seen at www.nhp.gov.in