Let’s Join Hands to Fight Against Hemophilia
Hemophilia is one of the oldest known genetic bleeding disorder which is caused by deficiency of the genes responsible for synthesis of clotting factors. Clotting factors are special type of proteins required for blood clotting. If a person does not have enough clotting factor VIII, then the condition is known as “hemophilia A”, while deficiency of clotting factor IX is known as “hemophilia B”.
|Misconception Individuals with hemophilia bleed faster than normal people
Fact Individuals with hemophilia bleed longer than normal people
The major symptoms of hemophilia are: prolonged bleeding, spontaneous bleeding, bleeding into joints and muscles, excessive bleeding following trauma or surgery, easy bruising, swelling, pain, and stiffness. Left untreated, it can lead to various life-threatening complications like deep internal bleedings, joint damage, and intracranial hemorrhage. However, there are various treatment options available for the disorder like replacement therapy with clotting factors, gene therapy and anti-fibrinolytic medicines. Unfortunately, a large population of hemophilic patients is unable to receive adequate treatment due to its high cost.
|Although the incidence of hemophilia is low and is estimated to affect approximately 1 in 10,000 people, only 25 % of those living with hemophilia get proper care.|
World Hemophilia Day (WHD) is, therefore, a day to consider those hemophilic patients who are unable to access the care and treatment they require to live a healthy life.
|History: WHD was established in 1989 with the help of the World Federation of Hemophilia (WFH). Since 1989, WHD is observed globally on April 17 in order to honor Frank Schnabel, the founder of WFH, whose birthday falls on the same date. Today, WHD has grown into a global event which is celebrated across 113 WFH member countries.|
“Treatment for all is the vision of all” is the main goal of WHD.
The main aim of WHD is to increase public awareness, educate patients, attract volunteers, and advocate for improved treatment and care of hemophilia. This day provides an opportunity to talk to your family, friends, and colleagues to raise awareness and increase support for the patients living with hemophilia and other bleeding disorders.
A patient with hemophilia must be encouraged to think and act positively. Since hemophilia is a lifelong condition, requires expensive treatment, and affects patient’s family life, therefore, it is important that parents, spouses, and other family members of the patient should be educated in all aspects of the patient’s care. Besides, general information and education should also be given to the community where hemophilic patient lives.
Today, someone born with hemophilia can live a normal life if he/she has access to adequate treatment. Although access to adequate treatment is a big challenge but the WFH has a vision and is trying hard to provide treatment for all the people with hemophilia.