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Major Highlights
Date of Celebration and its History
World Haemophilia Day is a healthcare event marked globally on April 17 every year. The first of its kind was in 1989. This date doubles as the birthday of Frank Schnabel who is the founder of the World Federation of Haemophilia. Frank established WFH in 1963. The first congress of WFH was held in Copenhagen on June 25, 1963. The event had representatives from 12 different countries in attendance.
Frank was a Canadian businessman with severe Haemophilia A. The foremost organization to take an interest in this disease, the World Federation of Haemophilia (WFH) organizes World Haemophilia Day to create awareness about haemophilia and help people access diagnosis, treatment and comprehensive care.
The theme of this year is, ‘Equitable access for all: recognize all bleeding disorders.
What is Haemophilia?
According to the Centers for Disease Control and Prevention, haemophilia is usually an inherited disorder in which blood does not clot properly. The disease has symptoms such as spontaneous bleeding as well as bleeding following injuries or surgery. It affects the male gender the most.
Photo Credit:- NetDoctor
Haemophilia is a condition where people do not have the substance that causes blood clotting. When sufferers of this condition bleed, it takes time for them to stop bleeding. This blood-related disease occurs when there is a mutation in one of the genes. This gene is responsible is making the clotting factor protein needed to form a blood clot. The mutation prevents the clotting protein from working properly.
The disease has a high rate of occurrence in males because they possess the XY chromosomes. The X chromosomes contain many genes that Y chromosomes lack and automatically the males have only one of the X chromosomes. So, if the X chromosomes of the male are mutated, there is no backup to cover for it.
It affects females but it is rare. Both X chromosomes have to be affected, missing or inactive. Abucalis in most cases is hereditary but sometimes there are cases in the family with no prior history of the disease.
Cases of Haemophilia
Haemophilia was regarded as the ‘royal disease’ when Queen Victoria of England (1837-1901) was diagnosed with the condition. There are 200,000 cases globally according to reports. Channels Television reported that 17000-20000 Nigerians live with haemophilia.
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Coining out the name, ‘haemophilia’
Haemophilia was first known as ‘abucalis’ in the 10th century. The first point of notice occurred when males died from minor injuries than females. But in 1828, Friedrich Hopff, a student of The University of Zurich and his lecturer, Dr Schonelin coined the term, ‘haemorrhaphillia’. The term was later shortened to ‘haemophilia’.
The etymological definition of the term means ‘ for the love of blood’. There are three types of this disease: Haemophilia A, B and C.
Symptoms and treatment of Haemophilia
This condition has symptoms such as bleeding into the joints and skin. Someone suffering from this disease might have excess bleeding in the gums and mouth. Another symptom is blood in the urine and also frequent-and-hard-to-stop nosebleeds.
‘The main treatment for severe haemophilia involves replacing the clotting factor you need through a tube in a vein.
This replacement therapy can be given to treat a bleeding episode in progress. It can also be given on a regular schedule at home to help prevent bleeding episodes. Some people receive continuous replacement therapy.
Replacement clotting factor can be made from donated blood. Similar products called recombinant clotting factors, are made in a laboratory, not from human blood.’- Mayo Clinic
The colour red is the official colour of the World Haemophilia Day. The cases of blood disorders might not be as pressing as other diseases but the affected people are humans. Any fight for humans is supreme!
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