An Analysis of World Haemophilia Day

Credit: Deccan Chronicle

Introduction

World Hemophilia Day was started by the World Federation of Hemophilia (WHF) and is annually observed on the 17th of April. The international community started observing WHD in 1989 and April 17 was chosen to recognize Frank Schnabel the founder of WHF. World Hemophilia Day is aimed at raising awareness about hemophilia and other bleeding disorders. It also helps to raise funds for patients who cannot afford hemophilia treatment as well as attract volunteers for the World Federation of Hemophilia.

What is Haemophilia?

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 Haemophilia. Haemophilia is an inherited blood disorder disease in which blood does not clot properly. It is caused due to defects in the blood vessels, the coagulation mechanism, or the blood platelets and by a deficiency in a gene that resolves how the human body will make factors VII, IX, or XI.

Types of Haemophilia

Haemophilia has three forms namely Haemophilia A, B, and C. Out of these, Hemophilia A is the most common.

– Haemophilia A patient is treated by prescribing a hormone desmopressin.

– Haemophilia B patient is treated by infusing the patient’s blood with the clotting factors of a donor.

– Haemophilia C patient is treated by plasma infusion which ceases down profuse bleeding.

Theme of World Haemophilia Day

April 17, 2022, is World Hemophilia Day. The theme of the event this year is “Access for All: Partnership. Policy. Progress. Engaging your government, integrating inherited bleeding disorders into national policy“. By raising awareness and bringing hemophilia and other inherited bleeding disorders to the attention of policymakers, we can increase sustainable and equitable access to care and treatment.

Significance of World Haemophilia Day

The World Federation of Haemophilia (WFH) started celebrating the day in 1989 and chose April 17 to celebrate it in honour of the founder of WFH Frank Schnabel. Haemophilia was discovered in the 10th century and was found mainly in males. The disease was then known as Abulcasis. In the year 1937, Haemophilia genetic disorder was divided into two types namely A and B, however, no proper treatment was found till that time. Then, it was decided to raise awareness about the disease among the people and make them understand the need to give the right attention to this serious health issue. In 1963, the WFM was established to improve treatment and care for all haemophiliac patients.

Awareness-raising campaigns, conferences, workshops, etc. are being organized on this day by several communities and people. various kinds of activities are being performed to inform the general public about Haemophilia disease. Also, landmarks and monuments in Australia and around the world change their colour to red at the night to support World Haemophilia Day.

Conclusion

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 the fetal status. According to National Blood Transfusion Council under National Aids Control Organization (NACO) guidelines, 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.

References