World Hemophilia Day is a global healthcare event celebrated on the 17th of April every year, started by the World Federation of Haemophilia (WHF) with the intention to raise a call for the government authorities and local policymakers for the provision of a better treatment and care in addition to promote better control and prevention with Haemophilia.
A rare severe, inherited haemorrhagic disorder, Haemophilia is caused by malfunction of factor VIII and factor IX protein (factors required for blood clotting/ coagulation), leading to an abnormality in blood coagulation.
Although people of all races and ethnicities can be diagnosed with Haemophilia, men are more likely to be affected because the ailment is connected to the X chromosome. There is a 50% probability that a boy whose mother carries the Haemophilia gene will also be affected by Haemophilia, and her daughter being 50% risk of being carrier. Hence, Haemophilia is more common in males, despite the fact that it can affect females causing difficulties with menstruation and childbirth.World Hemophilia Day 2024 ThemeThis year 2024, World Hemophilia Day Theme is “Equitable access for all: recognizing all bleeding disorders”.
This theme emphasizes treatment for all and envisions a society in which every individual with inherited bleeding disorders has access to care, regardless of their kind of bleeding condition, gender, age, or location.Importance of World Haemophilia DayIn 2000, it was estimated that 4 lakh persons, or around 1 in 10,000 live births, were affected by this disorder worldwide, and only 25% of those affected had access to adequate treatment. In 2019, however, a meta-analysis showed that the number of men with the inherited bleeding condition is far higher, at 11.25 lakh. Even in high-income nations, only about 15% of the global population, has access to effective treatment for Haemophilia. The lack of resources for diagnosis and treatment leads to high mortality and morbidity rates in low- and middle-income countries.
This year, World Haemophilia Day celebrates its 31st anniversary with activities focused on encouraging the public to support government and policymakers for the provision of better treatment, prevention, and control of bleeds in persons suffering from bleeding disorders.
History of World Haemophilia DayWorld Haemophilia Day was first celebrated on the 17th of April 1989, by the World Federation of Haemophilia (WFH) to honour Frank Schnabel’s birthday, the WFH’s founder. Haemophilia wasn’t discovered until the 10th century, when people started paying attention to the disproportionate number of male deaths from seemingly small accidents. This condition was referred to as abulcasis at the time. However, this could not be treated owing to technological constraints. An anticoagulant was commonly used to treat a disease that was rampant among royal families at the time; however, the anticoagulant thins the blood and worsens the condition.
Types of HaemophiliaHaemophilia 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 profuse bleedingIn 1803, Dr John Conrad Otto of Philadelphia began researching “bleeders,” who eventually concluded that the disease was passed down from mothers to sons.
In 1937, Haemophilia was classified as a type A or B genetic disorder. However, effective treatment had yet to be developed up to that point.
Therefore, World Haemophilia Day focuses on educating Haemophilic patients and the general public about bleeding disorders. It also emphasizes the proper treatment and cares for Haemophilic patients.
