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Description
World Hemophilia Day is an annual event celebrated on April 17th to promote awareness about hemophilia, a rare and inherited bleeding illness. This year's World Hemophilia Day 2024 topic is "Equitable access for all: Recognizing all bleeding disorders." This essay will look at the history, relevance, and importance of this significant health observance.
History Of World Hemophilia Day
World Hemophilia Day was founded in 1989 by the World Federation of Hemophilia (WFH). The date of April 17th was chosen to commemorate the birth of Frank Schnabel, the organization's founder, who was instrumental in raising hemophilia awareness and improving treatment choices.
Hemophilia: The Royal Disease
While hemophilia cases have been reported since ancient Egypt, the condition gained global prominence in the nineteenth century when Queen Victoria of England was diagnosed with hemophilia B, also known as factor IX deficiency. She passed on this genetic feature to three of her nine offspring, giving hemophilia the nickname "the royal disease."
Etymology Of Hemophilia
The name "hemophilia" is a simplified version of the original term "hemorrhaphilia," coined by Dr. Schonlein, a University of Zurich professor, and his student, Friedrich Hopff.
Understanding Haemophilia
Hemophilia is an uncommon bleeding disorder in which the blood does not clot correctly due to genetic changes that affect the body's capacity to stop bleeding. This hereditary disease is more common in men because the genes essential for manufacturing clotting factors VIII and IX are on the X chromosome.
Types Of Hemophilia
There are three major forms of hemophilia-
Hemophilia A is caused by mutations in the F8 gene, which encodes clotting factor VIII.
Hemophilia B is caused by mutations in the F9 gene, which encodes clotting factor IX.
Hemophilia C is caused by a factor XI deficiency on an autosome and is considered a rare type of the illness.
Symptoms And Complications Of Haemophilia
People with hemophilia may experience a variety of symptoms and complications, such as excessive bleeding, joint discomfort, swelling, and bone problems. Undiagnosed cases, particularly in people with mild hemophilia, can be deadly, as a seemingly minor injury or operation can result in lethal internal bleeding.
Importance Of Diagnosis And Treatment
Accurate diagnosis of hemophilia is critical because it allows for proper management and treatment. While there is no cure for hemophilia, advances in treatment alternatives, such as factor supplementation and gene therapy, have dramatically improved the quality of life for those affected by the disorder.
World Hemophilia Day: Raise Awareness And Advocate For Change
World Hemophilia Day is a valuable opportunity to educate the public about the causes, symptoms, and obstacles that people with hemophilia and associated bleeding diseases encounter. It also emphasizes the importance of continued research, innovation, and increased access to healthcare, particularly in poor and marginalized populations.
Theme Of World Hemophilia Day 2024
This year's theme, "Equitable access for all: recognizing all bleeding disorders," emphasizes the importance of ensuring that all bleeding disorder patients, regardless of age, gender, or location, have access to the support, resources, and medical care they require to live fulfilling and empowered lives.
Advocate For Comprehensive Care And Support
World Hemophilia Day brings together the global bleeding disorders community to push for comprehensive care and support, such as access to specialist healthcare practitioners, cost-effective treatment options, and strong social and emotional support systems. This collaborative effort is critical for tackling the issues that people with hemophilia and other bleeding disorders encounter.
Role Of Healthcare Professionals And Advocacy Organisations
Healthcare specialists such as hematologists, genetic counselors, and specialized care teams are critical in providing correct diagnosis, proper therapy, and thorough management of hemophilia and associated disorders. Advocacy organizations, such as the World Federation of Hemophilia, work diligently to increase awareness, support research, and engage with governments and healthcare systems to enhance global access to care and treatment choices.
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