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WORLD HEMOPHILIA DAY

Young Bites. Dated: 4/17/2018 10:38:25 AM

Every April 17 World Haemophilia Day is recognised worldwide to increase awareness of haemophilia and other inherited bleeding disorders. This is a critical effort since with increased awareness comes better diagnosis and access to care for the millions who remain without treatment.World Haemophilia Day was started in 1989 by the World Federation of Hemophilia (WFH) which chose to bring the community together on April 17 in honour of WFH founder Frank Schnabel’s birthday. The World Federation of Hemophilia (WFH) is an international non-profit organization dedicated to improving the lives of people with hemophilia (also spelled haemophilia) and other genetic bleeding disorders. It educates hemophiliacs and lobbies for improved medical treatment. 75% of people in the world with bleeding disorders do not know it and do not receive care. World Hemophilia Day is an international observance held annually on April 17 by the WFH. which also serves to raise funds and attract volunteers for the WFH. It was started in 1989; April 17 was chosen in honor of Frank Schnabel’s birthday. A South Korean biopharmaceutical company, joins World Haemophilia Day; observed annually by the World Federation of Haemophilia (WFH) and the global haemophilia community. This year’s theme is “Sharing Knowledge Makes Us Stronger”. With this theme, the global bleeding disorders community focuses on the importance of sharing knowledge.It has been estimated that around the globe only 440,000 people suffer from hemophilia, thus very few people are aware about this disease. World Hemophilia Day offers an opportunity to speak to friends, family, colleagues and the caretakers of the affected patients for raising awareness and increasing support for them.
Haemophilia is a congenital disorder that causes longer-than-normal bleeding due to absent or deficient clotting factor in the blood. Haemophilia A is more common than haemophilia B; haemophilia A affects about 150,000 people, whereas haemophilia B affects about 30,000 people worldwide. Treatment regimens typically include on-demand and/or regular prophylactic infusions of factor replacement therapy to control or prevent the risk of bleeding. People with haemophilia, working closely with their healthcare professionals, can live healthy lives with proper care and adequate treatment. GC Pharma a biopharmaceutical company that delivers life-saving and life-sustaining protein therapeutics and vaccines. Headquartered in South Korea, GC Pharma is the largest plasma protein product manufacturer in Asia and has been dedicated to quality healthcare solutions for more than half a century. Green Cross Corporation updated its corporate brand to GC Pharma in early 2018. Green Cross Corporation remains the company’s registered, legal name. The celebration of the World Hemophilia Day commenced in 1989 and 17th of April was selected as the date to honor the birthday of the founder of World Federation of Hemophilia, Frank Schnabel. Hemophilia is a kind of genetic disorder that impairs the ability of human beings to control the blood clotting (which is utilized to discontinue bleeding when the blood vessels are ruptured). Most popular form of this disorder is Hemophilia A, which is seen in 1 out of 5000-10000 births of males and Hemophilia B, which is present in 1 out of 20000-35000 births of males. Frank Schnabel founded the World Federation of Hemophilia in the year of 1963 with headquarters in Montreal, Canada. Presently, there are 113 countries that are members of this organization and its current president is Alain Weill. The main aim of World Hemophilia Day is to raise awareness of the condition and bring understanding and attention of this issue to the wider public. The day is observed to be an awareness day for the disease and it also serves to attract volunteers and raise funds for the World Federation of Hemophilia. World Federation of Hemophilia is a non-profit entity which is dedicated towards improving the lives of people who are suffering from hemophilia and other alike genetic bleeding disorders. It educates the lobbies and hemophiliacs for enhanced medical treatment. Since 1989, World Hemophilia Day is celebrated across different countries to encourage large number of people and to get them involved in awareness-raising campaigns and a wide array of activities that are organized for the day, to tell general public about the condition of hemophilia. Anybody can get involved in the activities, but generally employees of various health organizations participate in the event. The employees of health organizations along with the patient groups worldwide conduct media events, awareness campaigns and other activities to educate people who are suffering from hemophilia as well as the general public about the bleeding disorders and to highlight the essence of proper care.
Hemophilia has three forms namely Hemophilia A, B and C. Out of these, Hemophilia A is the most common. The condition of Hemophilia cannot be cured but it can be treated to decrease symptoms and avert the future complications in health.Hemophilia is an inborn disorder, means it is passed through families. It is caused 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. Hemophilia A can be treated with the help of a medical professional by a prescription hormone. Such hormone is known as desmopressin which is given in the form of an injection in the patient’s vein. The medication functions by stimulating the factors which are accountable for blood clotting process. For the treatment of Hemophilia B, your doctor may infuse your blood with the clotting factors of a donor. For the treatment of Hemophilia C, your doctor might help you with plasma infusion which works to cease down profuse bleeding. Patient can also visit a physiotherapist for rehabilitation if his joints are damaged due to the disease.The World Federation of Hemophilia will focus on the importance of sharing knowledge. The bleeding disorders community is filled with the first-hand knowledge and experience needed to help increase awareness, as well as to improve access to care and treatment. Symptoms of Hemophilia depend upon the severity of the patient’s factor deficiency. Patients with mild deficiency can bleed in situations of trauma. Patients with severe deficiencies can bleed without any reason which is known as ‘spontaneous bleeding’. Such bleeding may cause blood in the stool, blood in the urine, unexplained and large bruises, deep bruises, bleeding gums, joint pain, excess bleeding, tight joint, frequent bleeding in nose and irritability in children. Hemophilia also displays symptoms that are extremely critical and constitute medical emergencies. If a person experiences any of the symptoms like constant bleeding in an injury, neck pain, extreme headache, double or blurred vision, repeated vomiting or extreme sleepiness, he must immediately get a treatment. Find important educational resources and hear from top expertsLandmarks and monuments in Australia and around the world will support World Haemophilia Day by changing their lighting red on April 17. Annual celebration of World Hemophilia Day has its own theme. Every year, the theme is different in the observance of the day. The World Hemophilia day on 17th of April, 2017 is kept with the theme of “Hear their voices”. This disease principally affects men and boys. But in 2017, the theme is to acknowledge girls and women who are living with a bleeding disorder. The primary aim of the campaign is to unify the community and generate support to millions of young girls and women attacked by bleeding disorders. The theme has been kept to acclaim the female heroes of hemophilia.The campaign encourages women to take part in the conversation and share their stories on how hemophilia has affected their lives for others to learn about this condition.

 

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