Every year on April 17th, 'World Hemophilia Day' is observed. The occasion aims to educate people about rare bleeding disorders and support those suffering from this condition on a large scale. The day is dedicated to supporting the global bleeding disorders community and those suffering from such disorders regardless of age, gender or their location.
Theme of World Hemophilia Day 2024:
- The theme of this year's World Hemophilia Day is 'Equitable access for all: recognizing all bleeding disorders'.
History of World Hemophilia Day:
- The foundation of World Hemophilia Day was laid in 1989 by the World Federation of Hemophilia (WFH). The date of celebrating Health Day was set on April 17 each year to honour the organization's founder Frank Schnabel. Frank Schnabel played an important role in advocating hemophilia awareness and treatment. He also dedicated his life to improving the lives of people suffering from this disorder.
- Cases of hemophilia have been found in ancient Egypt. This disease is known as the 'royal disease'. Queen Victoria became a carrier of hemophilia B, also known as factor IX deficiency, during the 19th century. Queen Victoria passed this trait on to three of her subjects.
Origin of the word hemophilia:
- The term hemophilia is a shortened form of the term haemorrhaphilia which was coined by Professor Dr. Schönlein of the University of Zurich and his student Friedrich Hopff.
Significance of World Hemophilia Day:
- Hemophilia is a rare genetic disease that affects the ability of the blood to clot. It can have a huge impact on people with hemophilia. Under this, there may be problems related to bones, joint pain, swelling and internal bleeding. Unknown cases related to this can also be fatal.
- Hemophilia A/B is treated with supplements and gene therapy.
- People affected with hemophilia suffer from joint pain, bone-related issues, swelling, internal bleeding. Apart from this, they suffer from various co-morbidities including excessive bleeding even in minor injuries. In case of mild hemophilia, surgery or accident can lead to death if not diagnosed. Therefore diagnosis of the disease is very important.
- The day alerts people about the causes, symptoms, diagnosis and management of hemophilia as well as the challenges faced by people suffering from this condition.
About Hemophilia:
- Hemophilia is a rare disorder where blood clotting is impaired, leading to abnormal bleeding. This disease which is more common in men, is caused by changes in the genes that regulate our body to stop bleeding.
- There is currently no cure for the bleeding disorder and it is important to take measures to manage it.
Types of Hemophilia:
- Hemophilia A and B are the most common. It is caused by a change or mutation in the F8 or F9 genes respectively on the X-chromosome. The genes associated with hemophilia A and B, F8 and F9, provide instructions for the production of clotting factors VIII and B, respectively.
- Mutations in these genes can cause clotting factors to be reduced or non-functional, resulting in bleeding disorders.
- Hemophilia A/B is an X-linked recessive genetic disorder. The gene responsible for hemophilia is located on the X chromosome, which is why it primarily affects males. Since males have one X and one Y chromosome (XY), and females have two X chromosomes (XX), hemophilia primarily affects males.
- Women can be carriers of the hemophilia gene if they inherit it with a normal X chromosome and a mutation, but they usually do not show symptoms themselves.