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.
Hemophilia is a condition in which bleeding is prolonged. Hemophilia is a condition present from birth and is normally inherited; 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).
The incidence of hemophilia is quite low. Statistics on the incidence of hemophilia vary however, its estimated that in the United States 1 in every 5,000 -10,000 people are born with it.
When a person without hemophilia bleeds, 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.
Raising Awareness About Each Type
There are two types of hemophilia. Each type is linked to a low level of a certain clotting factor. 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.
Each type of hemophilia causes prolonged bleeding which is the main symptom of hemophilia. Bleeding can range from mild to severe. Bleeding is often internal, although people can bleed outside the body too.
Other symptoms include spontaneous bleeding, bleeding into the muscles or joints, bleeding for a prolonged period after having surgery, having a cut or dental work, and big bruises. In very mild cases, bleeding may be for a shorter duration and only arise after injury or surgery.
In severe cases, bleeding is spontaneous, with no obvious cause and is more frequent (around one to two times a week). In severe cases, bleeding may go into the joints and muscles of the muscles of the body. Further symptoms may include, swelling, pain and stiffness, an ache or problems using the muscle or joint. Repetitive bleeding into a joint can also cause arthritis.
Left untreated, severe cases of hemophilia can lead to an early death. However, there are successful treatment options available, and if managed, people with hemophilia are largely unaffected by this condition living full and healthy lives. Treatments for hemophilia involve injecting the missing clotting factor into the bloodstream.
Why do we need an awareness campaign for hemophilia?
Unfortunately, there are many people in the world, who receive poor treatment or no treatment at all, for hemophilia and related bleeding disorders. According to the World Federation of Hemophilia, about 1 in every 1000 person has a bleeding disorder; many are left untreated. The aim of World Hemophilia Day is to raise awareness about hemophilia and increase the availability of treatments for this condition around the world.
As with many other awareness campaigns, a simple but effective slogan is used to help raise awareness for the issues concerned. The slogan for World Hemophilia Day is ‘Close The Gap’, which reflects the difference in treatments available to people living in different parts of the world. By working together, it is hoped that we can close the gap of hemophilia care around the world. ‘Close The Gap’, is an apt phrase; when blood clots, a ‘gap’ is closed which stops bleeding.
Dr D K Jha,
Associate Professor, Dept of Medicine, RIMS, Ranchi