Hemophilia: Hemophilia is an inherited disorder where a person’s blood does not clot properly. This means a person with hemophilia will bleed longer than a person without it because they do not have enough clotting factor in their blood, which helps change blood from a liquid to solid state. There are 12 clotting factors, and people hemophilia will have too little of Factor VIII (8)(Hemphilia A), Factor IX (9)(Hemophilia B)or Factor XI (Hemophilia C). A child with Hemophilia A or B may have excessive bruising, excessive bleeding, easy bleeding, nose bleeds and bruising and bleeding in the joints. A child with hemophilia may also have blood in his or her urine. Symptoms of Hemophilia C are generally very mild. Hemophilia affects boys more often than girls, and in the U.S. one out of every 5,000 to 10,000 boys are born with it.
Causes: Hemophilia is typically an inherited disorder, which means it is passed down from the parents to a child through genes. The genes that cause Hemophilia A and B are located on the X chromosome, which means it is passed by the mother, not the father. The gene that causes Hemophilia C can be passed on to children by either parent.
Possible complications: Hemophilia can cause internal bleeding in muscles which can result in swelling and damage to joints. The need for blood transfusions also adds the risk of infection from contaminated blood. In the U.S. there is a decreased risk due to advanced testing that is done; however in other parts of the world, the risk for infection is greater
Treatment: Treatment for mild Hemophilia A may involve the hormone desmopressin (DDAVP) which helps stimulate the body into releasing additional clotting factor. Children with Hemophilia A and B can also receive injections of clotting Factor 8 or 9, which is extracted from donated blood or can be genetically engineered. Factor 11 is currently only available in Europe. Children in the U.S. with Hemophilia C need plasma transfusions to help with bleeding episodes.
Prognosis: Most children with this special need have a normal life span and can lead independent lives.
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Stories or Blogs from Families who have Parented a Child with Hemophilia: