5 hemophilia facts you might not know

Hemophilia, a rare bleeding disorder, is a typically hereditary disease in which the blood does not clot properly. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. We explore a few key hemophilia facts that you might not know. 

5 hemophilia fast facts

  1. The two most common types of hemophilia are hemophilia A and hemophilia B. Hemophilia results from a missing or deficient protein needed for blood clotting. Hemophilia A is caused by a lack of clotting factor VIII and hemophilia B is caused by a lack of clotting factor IX. The disease varies from person to person: it can be mild, moderate, or severe, depending on the percentage of factor levels in a person’s blood.
  2. Hemophilia occurs in about 1 of every 5,000 male births. Hemophilia A is about four times as common as hemophilia B, and about half of those affected have a severe form. Approximately 400,000 people worldwide are living with hemophilia and about 20,000 are living with it in the United States. Hemophilia affects people from all racial and ethnic groups.
  3. There is no cure for hemophilia, but treatments have come a long way. One type of hemophilia treatment is replacement therapy: doctors inject concentrates of clotting factor VIII or clotting factor IX into a patient’s vein to replace low or missing factor. Some people have regular therapy to prevent bleeding. 
  4. Hemophilia symptoms range, but they normally include: 
    • bleeding into the joints (this can cause swelling and pain or tightness in the joints; it often affects the knees, elbows, and ankles)
    • bleeding into the skin (which can cause big bruises) or muscle and soft tissue causing a build-up of blood in the area
    • bleeding of the mouth and gums
    • bleeding after having shots
    • blood in the urine or stool
    • frequent and hard-to-stop nosebleeds
  5. Since hemophilia is commonly genetic, many people who have the disorder or have had family members with the disorder will ask that their baby boys get tested soon after birth. While the disorder is usually passed on, approximately one-third of babies who are diagnosed with hemophilia have no other family members with the disorder. A hemophilia diagnosis includes screening tests and clotting factor tests. Screening tests are blood tests that show if the blood is clotting properly. The types of screening tests are Complete Blood Count (CBC), Activated Partial Thromboplastin Time (APTT) Test, Prothrombin Time (PT) Test, and the Fibrinogen Test. Clotting factor tests are also required to diagnose a bleeding disorder. This blood test shows the type of hemophilia whether it is mild, moderate, or severe. 

Hemophilia research can’t move forward without patients taking part. The good news: clinical trials and research studies are available for people living with hemophilia.