This Day aimed at raising awareness about Haemophilia and other inherited bleeding disorders. It is an effort for better diagnosis and access to care those people who remain without treatment.
It also gives an opportunity to discuss about this disease with friends, family, colleagues, etc. and to support the patients suffering from Haemophilia disease. It raises funds for the patients who cannot afford the treatment cost.
Theme of 29th World Haemophilia Day 2019
The theme of 29th World Haemophilia Day 2019 is “Outreach and Identification”. To concentrate on reaching out and identifying new members of the bleeding disorders community.
History of World Haemophilia Day
The World Haemophilia Day was started by the World Federation of Haemophilia in 1989 and 17 April, was chosen to celebrate it in honour of the founder of World Federation Haemophilia Frank Schnabel's birthday. Actually, Haemophilia was discovered in the 10th century, when people started to take serious interest, especially in males, who after minor injuries due to bleeding caused death. That time this disease was known as Abulcasis. But, due to limited technology it was not cured. Especially, that time this disease was common in European royal families and was treated with aspirin which further thinned the blood and condition becomes worse. Then, Dr. John Conrad Otto of Philadelphia in 1803 began to study people called "bleeders" and said that it is a hereditary illness which passes on to males by their mothers. In 1937, hemophilia genetic disorder was divided into two types: A and B. But no proper treatment was invented till that time.
Then, on 17 April was chosen to raise awareness among people about Haemophilia disease on the occasion of the founder of WFH birthday's. To collect funds for the treatment of this disease for those people who can't afford it.
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How World Haemophilia Day is celebrated
On 17th April every year worldwide World Haemophilia Day is celebrated to raise understanding and awareness of this genetic disorder and other linked bleeding disorders. Many people organise awareness-raising campaigns and perform several activities to inform general public about the Haemophilia disease. Even the employees of various health organisations participate in the events. The main issue with this disease is that people suffering from Haemophilia won't get proper treatment or sometime no treatment. Do you know that almost 1 out of 10,000 has bleeding disorder and requires proper treatment?
In India on this day various events are organised by groups of people in several states. Indian Haemophilia Foundation situated in New Delhi in association with the Ministry of Health and Family Welfare also celebrates this day by providing medical facilities to the needy and increases the awareness about this disease. Program is also conducted to take and update decision at the national and the state level about the sufferings and disorder of the Haemophilic community.
About Haemophilia disease
- 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 which resolves on how the human body will make factors VII, IX or XI.
- The genes are found on the X chromosome, which makes Hemophilia a disease of X-linked recessive.
- Person suffering from this disease bleed spontaneously. After injury or surgery a person may bleed for longer than a healthy person.
- The blood coagulation mechanism is a process which transforms the blood from a liquid into a solid, and involves several different clotting factors. In this mechanism fibrin is generated and together combine with the platelet to stop the bleeding.
- If coagulation factors are missing or deficient in the body then blood does not clot properly and bleeding continues.
- 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 cease down profuse bleeding.
Therefore, World Haemophilia Day focuses on educating haemophilic patients and the general public about bleeding disorders. It also emphasises for the proper treatment and care to the Haemophilic patients.