Not “Just a cut”: World Bleeding Disorders Awareness Day

Posted on April 14, 2017 by kerri
In the United States, 20,000 people live with hemophilia, and 1-2% of Americans live with von Willebrand Disease. [1] Each of these diseases cause bleeding to last longer, are not contagious, and can be treated but have no cure. [1] Hemophilia affects mostly boys and men, whereas von Willebrand Disease affects men and women equally. [2,1]  Tomorrow, April 14, is World Bleeding Disorders Awareness Day.
What is hemophilia?
Hemophilia is probably the more well known bleeding disorder. Hemophilia is considered a rare disorder, but it affects 1 in 5000 male births—it is carried on the X chromosome, which means boys are more likely to get hemophilia than girls. [3] There are different types of hemophilia (that is, the cause of the hemophilia), and it can range from mild to severe based on the levels of certain blood clotting factors present.
Symptoms of Hemophilia [2]
  • Bleeding lasts longer—people do not bleed faster, but they have more difficulty clotting blood; this means they do lose more blood over a greater amount of time.
  • Nose bleeds may happen for no reason
  • Bleeding may stop and re-start unexpectedly
  • Bruises and hemotomas (“blood bruises”) may occur frequently. Bruises may be large. Bruises may be unexplained.
  • Blood may be present in the urine or stool
  • Dental bleeding (ie, lost tooth or dental work) may take longer to stop)
  • For women, menstrual periods may be very heavy or last a long time.
Treatment
Hemophilia is treated by infusions or injections of factors that are deficient (low) in the blood. The type of factor replacement will depend on the type of hemophilia a person has.
What is von Willebrand Disease?
In 2013, I was evaluated for a bleeding disorder, specifically von Willebrand disease. Fortunately, in my own situation, I was instead determined to have a uterine fibroid causing my excessive menstrual bleeding. However, this is a common symptom of von Willebrand disease in women, and I am fortunate that an attentive emergency room physician chose to refer me to be evaluated during my first blood transfusion in 2013, to rule this out—the doctor had two sons with hemophilia, so I feel we were meant to cross paths that night! The test was a simple blood test (by which I mean I think they took about 10 vials of blood even in light of my anemic state!)
Von Willebrand Disease occurs equally in women and men. Like hemophilia, VWD varies in severity based on how much von Willebrand factor is present in a person’s blood. It can be mild to severe, and the symptoms are the same as in hemophilia, and caused by the inability of the body to create a “platelet plug” to stop bleeding. [3] Some VWD patients are treated with factor concentrate infusions similar to hemophilia, and/or these treatments may be used prior to surgery to decrease bleeding time [4], while others are treated with a special nasal spray that prompts the body to release more von Wllebrand factor. [4] For women, hormonal contraceptives may be used to decrease menstrual bleeding, [4] as well, other medications are used to help blood clot, usually as well before surgical procedures. [4]
Should people with Bleeding Disorders wear medical ID?
Regardless of your bleeding disorder or severity, you should wear bleeding disorder medical ID, stating as much information about your type of hemophilia or von Willebrand Disease as possible. Carrying a wallet card with information about infusion treatments may be helpful. Hemophilia medical ID or von Willebrand medical jewelry are very important to ensuring you get the right treatment in an emergency, and that care is taken if emergency surgery is required. Speak with your hematologist to ensure you engrave the most appropriate information on your bleeding disorder medical ID bracelet.

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