World Haemophilia Day is an annual celebration on 17 April to raise awareness about haemophilia, a rare bleeding disorder in which the blood does not clot properly. This disease, more common in men, is caused by changes in the genes that regulate how our body stops bleeding. The day is dedicated to supporting the global bleeding disorders community and advocating for access to care and treatment for all people suffering from such disorders, regardless of age, gender or their location. There is currently no cure for the bleeding disorder and it is important to take measures to manage it. (Also Read | World Haemophilia Day 2023: From easy bruising to prolonged bleeding, symptoms of haemophilia)
History of World Haemophilia Day
The foundation of this day was laid by the World Federation of Haemophilia (WFH) in 1989. Health Day was established on April 17 every year to honor the organization’s founder, Frank Schnabel, who played a significant role in advocating hemophilia awareness and treatment and worked to improve the lives of those suffering from the disorder. Dedicated his life.
While cases of hemophilia have been found in ancient Egypt, the disease became known as the ‘royal disease’ when Queen Victoria of England became a carrier of hemophilia B, or factor IX deficiency, in the 19th century and passed it on to three of her children. This symptom transferred. Nine children.
The term hemophilia is a shortened form of the term hemophilia which was coined by Professor Dr. Schönlein of the University of Zurich and his student Friedrich Hopf.
Theme of World Haemophilia Day
The theme of this year’s World Haemophilia Day is ‘Equitable access for all: recognizing all bleeding disorders’. Now is the time for people with any type of hereditary bleeding disorders to receive the support, resources and medical care they need to live full and empowered lives, free from the limitations imposed by their conditions.
Importance of World Haemophilia Day
A rare genetic disease that affects the ability of the blood to clot can have a devastating impact on those who suffer from it and can lead to bone problems, joint pain, swelling and internal bleeding. Undiagnosed cases can also be fatal.
“Although hemophilia A/B is treated in the form of factor supplementation and gene therapy, people affected by hemophilia suffer from various co-morbidities, including joint pain, bone-related issues, swelling, internal bleeding, and excessive bleeding even in minor injuries. In case of mild hemophilia, undiagnosed surgery or accident can lead to death, hence diagnosis is extremely important,” says Dr. Deepanjana Dutta, BGCI Level II Certified Genetic Counselor at Renew Healthcare. .
The day provides an opportunity to educate people about the causes, symptoms, diagnosis and management of hemophilia as well as the challenges faced by people suffering from this condition. World Haemophilia Day promotes a sense of community and solidarity among individuals affected by haemophilia, their families, caregivers, healthcare providers and advocacy organizations, reinforcing the importance of support networks and mutual understanding. It also highlights the need for ongoing research, innovation and advancements in the field of hemophilia treatment and management.
types of hemophilia
“Haemophilia A and B are the most common. It is caused by a change or mutation in the F8 or F9 gene, respectively, on the IX. Mutations in these genes result in reduced or nonfunctional bleeding disorders, with the severity of hemophilia varying depending on the specific mutation and the level of clotting factor present in their blood. It can be caused by a deficiency of Factor XI located on autosomes, although this is rare,” says Dr. Dutta.
“Hemophilia A/B is an X-linked recessive genetic disorder. This means that the affected gene responsible for hemophilia is located on the chromosomes are XX), hemophilia mainly affects men. Women can be carriers of the hemophilia gene if they inherit it with a normal ” experts say.
