Each bleeding disorder comes with its own set of challenges and complications. Read the full article to learn 5 tips for managing your bleeding disorder.
Hemophilia is a rare, inherited bleeding disorder where the blood does not clot properly. A person with a bleeding disorder tends to bleed for a more extended period before a blood clot can properly form. Blood clotting is an extraordinarily complex process. Many different blood-clotting proteins, called 'clotting factors,' play vital roles in the body’s blood clotting process.
If a factor is deficient, the specific clotting protein is low or not working correctly in the blood. In patients with Hemophilia C (also called Rosenthal Syndrome), the blood is deficient in Factor XI (11). This particular bleeding disorder is exceptionally rare and was only recognized for the first time in 1953. It is estimated that Hemophilia C occurs in 1 out of 100,000 people in the general population.
This particular bleeding disorder is passed on when both parents have the same mutated gene, which is incredibly rare. If a child inherits the gene from only one parent, they will be a carrier and may even experience mild symptoms themselves. Typically, this type of hemophilia does not cause spontaneous bleeding or long-term damage like Hemophilia A (Factor VIII deficiency) or Hemophilia B (Factor XI deficiency). Hemorrhaging may occur though following trauma or surgery.
Diagnosis of Hemophilia C includes screening tests and clotting factor tests. Screening tests are blood tests that show if the blood is clotting properly.
Factor XI (11) levels in the blood do not always correlate with bleeding symptoms. Since bleeding is so inconsistent, Hemophilia C tends to pose more challenges to manage and treat than Hemophilia A or Hemophilia B. Some patients with Hemophilia C report experiencing frequent nosebleeds. In contrast, others say they have only experienced hemorrhaging episodes after procedures such as wisdom teeth removal, surgery, or trauma. Patients with Hemophilia C may also experience frequent bruising or blood in the urine.
Women with Hemophilia C have also reported heavy menstrual periods and postpartum bleeding. For women who are pregnant, Factor XI (11) does not vary much during pregnancy because female hormones can improve coagulation or blood clotting, which may reduce the risk of bleeding during their pregnancy.
The best way to treat hemophilia is to replace the missing factor so that the blood can clot properly. This is typically done by injecting factor concentrates into a person’s vein. Treatment may also consist of a medication given through a vein or by mouth (as a pill or a liquid).
The two main types of clotting factor concentrate available are:
hemophiliafed.org
hemophilia.org
stepsforliving.hemophilia.org
cdc.gov
Each bleeding disorder comes with its own set of challenges and complications. Read the full article to learn 5 tips for managing your bleeding disorder.
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Hemophilia is a rare, inherited bleeding disorder where the blood does not clot properly. In patients with Hemophilia C (also called Rosenthal Syndrome), the blood is deficient in Factor XI (11). Read the full article to learn more.