Every year, April 17 marks World Hemophilia Day, established in 1989 by the World Federation of Hemophilia (WFH) to raise awareness of hemophilia and bleeding disorders, both classified as rare diseases. It is a day when hemophilia patients, their families and medical professionals around the world come together to raise awareness and call for improvements in diagnosis and treatment. This year, the day is upon us once again.
Hemophilia is a rare congenital disorder in which patients are born lacking blood clotting factors. In Korea, approximately 2,200 patients live with the condition. While the number amounts to only one or two per tens of thousands of people, each of those individuals lives with a level of tension that others do not share. When bleeding occurs, hemophilia patients take far longer to achieve hemostasis than the general population.
Daily life for severe hemophilia patients carries even greater tension. Spontaneous bleeding can occur in joints or muscles without any apparent injury, and repeated episodes can lead to joint damage or complications. Even routine movements such as walking or running require caution, and medical situations involving bleeding — dental procedures or surgeries — demand special preparation. From the moment a child begins to stand and take first steps, parents must watch over them with constant vigilance. The physical, psychological and financial burdens on hemophilia patients who must continue treatment and management throughout their lives are by no means light.
