Hemophilia and other bleeding disorders remain as one of the most misunderstood conditions. A lot of people with bleeding disorders are misdiagnosed because of the lack of understanding by medical practitioners. This leads to unimaginable pains for the sufferer and their families. Continuous efforts to raise awareness on bleeding disorders has to be made to make people understand that yes, there is such a condition. And yes, Virginia, you don’t have to suffer in silence!
Read on this informative piece from Philippine Online Chronicles. Thanks to Noemi Lardizabal-Dado and Sassy Mom for painstakingly putting together this article.
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Today is World Hemophilia Day. But because it is a rare disease, few people understand and know about hemophilia.
In the Philippines, there are about 8,000 persons with hemophilia, but only 1,000 of them are registered with the Philippine Hemophilia Foundation (PHF). There are hemophiliac patients out there who do not even know they have the disease, and so they are not being treated.
Bleeding disorders often manifest innocuously as gum bleeding when brushing teeth, bruising, or, as in the case of Star, frequent nose bleeding.
Star’s mother, Public Relations practitioner Andrea Trinidad-Echavez, comes from a family of bleeders. Andrea recounts the time when she frequently received calls from school and school bus drivers regarding her daughter’s nosebleeding episodes. They consulted many specialists and went through ENT (Eyes, Nose, and Throat) and neurological work-ups to find the cause of Star’s nosebleeding. In September 2006, Star’s nosebleeding came to an alarming point so they were finally referred to a prominent hematologist who diagnosed Star with Von Willebrand Disease. Similar to hemophilia, this is a rare bleeding disorder caused by deficiency of a blood clotting protein known as von Willebrand Factor.
The human body has 12 clotting factors, numbered using Roman numerals, which work together in the coagulation process and stop bleeding. Hemophilia is a genetic bleeding disorder wherein the blood does not clot properly due to a lack of clotting factors. As a result, hemophiliacs will bleed longer than normal persons and are more vulnerable to internal bleeding.
Bleeding and bruising are among the major symptoms of hemophilia. The extent of the bleeding depends on the severity of the condition and location of the bleeding. Internal bleeding is also common, especially among people with severe hemophilia. This condition should be treated immediately in order to contain the bleeding and prevent damage to other parts of the body.
In children, the first signs could be heavy bleeding after tooth extraction, prolonged nosebleeds, swelling and bruising of the joints and unlikely places, and excessive bleeding after a surgery. Children with severe hemophilia may bleed extensively after their circumcision.
A child with hemophilia will find it difficult to move the joint or muscle affected by bleeding because of pain and swelling. Parents should be aware of these conditions in order to provide appropriate and timely treatment. (Read full story here)