World Haemophilia Day
Globally 1 in 1,000 people has a bleeding disorder. Most are not diagnosed and do not receive treatment. Together we can change that. World Haemophilia Day provides an opportunity to talk to your family and friends, colleagues, and caregivers to raise awareness and increase support for those living with an inherited bleeding disorder.
Light it Up Red!
World Federation of Haemophilia (WFH) encourages the community to come together and show support in raising awareness for global bleeding disorders by lighting it up red. Each year WFH have added new landmarks and monuments to the list of WFH partners who support World Haemophilia Day by changing their lighting red on April 17.
Treatment for All is the Vision
of All
In people with bleeding disorders, the clotting process doesnt work properly. As a result, people with bleeding disorders can bleed for longer than normal, and some may experience spontaneous bleeding into joints, muscles, or other parts of their bodies. Haemophilia is a bleeding disorder that affects approximately 1 in 10,000 people. People with haemophilia do not have enough clotting factor VIII (haemophilia A) or IX (haemophilia B) in their blood which inhibits the clotting process. The most common bleeding disorder is von Willebrand disease (VWD) which is generally less severe than other bleeding disorders. Many people with VWD may not know that they have the disorder because their bleeding symptoms are very mild. Rare clotting factor deficiencies are disorders in which one of several clotting factors is missing or not working properly. Less is known about these disorders because they are diagnosed so rarely. In fact, many have only been discovered in the last 40 years. Finally, inherited platelet disorders are conditions in which platelets dont work the way they should, resulting in a tendency to bleed or bruise.
For over 50 years, the World Federation of Haemophilia (WFH) has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including haemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.
WFH save and improve lives by: training experts in the field to properly diagnose and manage patients; advocating for adequate supply of safe treatment products; and educating and empowering people with bleeding disorders to help them live healthier, longer lives. However, much more still remains to be done. The reality is that the majority of people with bleeding disorders still receive very inadequate treatment or no treatment at all.
The percentage is even higher for those with von Willebrand disease and rare factor deficiencies. The vision of Treatment for All is that one day; all people with a bleeding disorder will have proper care, no matter where they live. Treatment for All means: proper diagnosis, management, and care by a multidisciplinary team of trained specialists; safe, effective treatment products for all people with bleeding disorders; and expanding services beyond haemophilia, to those with von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.
The World Federation of Haemophilia (WFH), an international not-for-profit organization, was established in 1963. It is a global network of patient organizations in 127 countries and has official recognition from the World Health Organization.
Hemophilia awareness day
Haemophilia awareness day was first established in 1989 by the World Federation of Haemophilia (WFH). The date of 17th April was chosen to honor Frank Schnabel the founder of WFH, whose birthday falls on the same date.
Haemophilia is a condition in which bleeding is prolonged. Haemophilia is a condition present from birth and is normally inherited; you cant catch haemophilia or pass it onto others. In some rare instances, haemophilia may develop later in life (typically affecting people in the 50+ age group). The incidence of haemophilia is quite low. Statistics on the incidence of haemophilia 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 haemophilia bleeds, normal levels of clotting factor, a protein in the blood, causes the blood to clot and stops the bleeding. However, haemophiliacs (people with haemophilia) have lower levels of clotting factor in the blood and bleeding continues for much longer periods.
Raising awareness about each type
There are two types of haemophilia. Each type is linked to a low level of a certain clotting factor. Haemophilia A is the more common type and is linked to low levels of clotting factor VIII (8). Haemophilia B is more rare and is associated with low levels of clotting factor IX (9).
Haemophilia is diagnosed by taking a blood sample and
testing the levels of clotting factor VIII IX.
Each type of haemophilia 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 haemophilia can lead to an early death. However, there are successful treatment options available, and if managed, people with haemophilia are largely unaffected by this condition living full and healthy lives. Treatments for haemophilia involve injecting the missing clotting factor into the bloodstream.
Why do need an awareness campaign for haemophilia?
Unfortunately, there are many people in the world, who receive poor treatment or no treatment at all, for haemophilia and related bleeding disorders. According to the World Federation of Haemophilia, about 1 in every 1000 person has a bleeding disorder; many are left untreated. The aim of World Haemophilia Day is to raise awareness about haemophilia 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 Haemophilia 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 haemophilia care around the world. Close The Gap, is an apt phrase; when blood
clots, a gap is closed which stops bleeding.
Source: World Federation of Haemophilia
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