World Hemophilia Day is held annually on April 17 by the World Federation of Hemophilia (WFH). This day aims at bringing awareness to hemophilia and other bleeding disorders. It was started on 17 April 1989. The date 17 April was chosen in honour of Frank Schnabel's birthday.
This year's theme is 'Adapting to Change, sustaining care in a new world.'
The main goal of World Hemophilia Day is to bring the global bleeding disorder community together.
The Covid-19 pandemic has had a major impact on people, especially on people with a bleeding disorder.
What is Hemophilia?
Hemophilia is usually an inherited bleeding disorder in which the blood doesn't clot properly. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. Blood contains many proteins called clotting factors that can help to stop bleeding. People with hemophilia have low levels of either factor 8 or factor 9. The severity of Hemophilia that a person has is determined by the amount of factor in the blood. The lower the amount of the factor, the more likely it is that bleeding will occur which can lead to serious health problems.
In rare cases, a person can develop hemophilia later in life. The majority of cases involve middle-aged or elderly people, or young women who have recently given birth or are in the later stages of pregnancy. This condition often resolves with appropriate treatment.
Signs and Symptoms:
Bleeding into the joints. This can cause swelling and pain or tightness in the joints, it often affects the knees, elbows and ankles.
Bleeding into the skin (which is bruising) or muscle and soft tissue causing a build-up of blood in the area (called a hematoma).
Bleeding of the mouth and gums and bleeding that is hard to stop after losing a tooth.
Bleeding after circumcision.
Bleeding after vaccinations.
Bleeding in the head of an infant after a difficult delivery.
Blood in the urine or stool.
Frequent and hard-to-stop nosebleeds.
The best way to treat Hemophilia is to replace the missing blood clotting factor so that the blood can clot properly. This is done by infusing commercially prepared factor concentrates.
People with hemophilia can learn how to perform these infusions themselves so that they can stop bleeding episodes and by performing the infusions on a regular basis, they can even prevent most bleeding episodes.
Good quality medical care from doctors and nurses who know a lot about the disorder can help prevent some serious problems.
Often the best choice for care is to visit a comprehensive Hemophilia Treatment Center (HTC). An HTC not only provides care to address all issues related to the disorder, but also provides health education that helps people with hemophilia stay healthy.