Supported by the World Federation of Hemophilia (WFH), Hemophilia Awareness Day was first established in 1989. The date of 17th April was chosen to honor Frank Schnabel, the founder of WFH, whose birthday falls on the same date.
The aim of World Hemophilia Day is to raise awareness about hemophilia and increase the availability of treatments for this condition around the world. There are many people in the world who receive poor treatment or no treatment at all. Also, there are people who are not aware of the fact that they are hemophiliac. Thus, this day is celebrated to make people aware of what hemophilia and other bleeding disorders are and how one can get it treated.
Haemophilia, a mostly inherited genetic disorder, impairs the body’s ability to make blood clots, a process needed to stop bleeding. This results in people bleeding longer after an injury, easy bruising, and an increased risk of bleeding inside joints or the brain. You can’t ‘catch’ hemophilia or pass it onto others. In some rare instances, hemophilia may develop later in life (typically affecting people in the 50+ age group).
When a person without hemophilia bleeds, with normal levels of clotting factor, a protein in the blood causes the blood to clot and stops the bleeding. However, hemophiliacs (people with hemophilia) have lower levels of clotting factor in the the blood and bleeding continues for much longer periods.
The theme for World Hemophilia Day in 2017 is ‘Lighting it up red’. This campaign is to create visibility for people living with a bleeding disorder so that they know that the WFH and their peers are there for them. “Lighting it up red” is an invitation to find out more about World Hemophilia Day and inherited bleeding disorders. It’s also an opportunity for them to learn about the fact that many people have inherited bleeding disorders and are not diagnosed, or live with one and don’t have access to care.
There are two types of hemophilia. Hemophilia A is the more common type and is linked to low levels of clotting factor VIII (8). Hemophilia B is more rare and is associated with low levels of clotting factor IX (9). Hemophilia is diagnosed by taking a blood sample and testing the levels of clotting factor VIII & IX.
Hemophilia can be mild, moderate or severe depending on how much clotting factor the body makes. People with mild haemophilia usually bleed excessively only after injury or surgery. In contrast, those with severe haemophilia may have around 20 to 30 episodes of excessive bleeding after minor trauma or spontaneous bleeding (i.e. not caused by an injury of some sort) every year if left untreated. Bleeding is particularly common in the joints and muscles.
World Hemophilia Day is here to bring a positive change in the lives of those suffering from it. They will know that they are not alone and will also learn about the supportive community that is in place for them. This disorder may be treated through blood transfusions but however, the struggle doesn’t end just there. World Hemophilia Day 2017 can help ensure that these people do not suffer in silenc