Arizona von Willebrand Foundation
Advocacy, Community & Education for Arizonans with von Willebrand disease
The Arizona von Willebrand Foundation is a subsidiary of the Arizona Blood Alliance. We are dedicated to serving Arizonans living with von Willebrand disease through advocacy, education and community events.
What is von Willebrand disease?
Von Willebrand Community Resources
-
Von Willebrand disease (VWD) is an inheritable bleeding disorder. Many different proteins are needed to make a person’s blood clot successfully. People with VWD are either missing or low in the clotting protein von Willebrand factor (VWF) – or it doesn’t work as it’s supposed to.
VWD is the most common bleeding disorder, affecting up to 1% of the US population – or approximately 1 in every 100 people. It occurs equally in men and women. However, women may be more symptomatic due to heavy menstrual bleeding (periods). VWD occurs equally across all races and ethnicities.
(National Bleeding Disorders Foundation)
-
The main symptoms of VWD are:
-Frequent (more than 5 a year) nosebleeds that last longer than 10 minutes
-Bleeding from cuts or injuries that lasts longer than 10 minutes
-Bruising easily, with bruises that are raised and larger than a quarter-Being told you are “low in iron” or have been treated for anemia. -
-Heavy bleeding after any surgery including dental surgery
-Having someone in your family who has one or more of these symptoms
-Have someone in your family who has been diagnosed with a bleeding disorder such as von Willebrand disease or hemophilia.
-For women, girls and those who menstruate:
-Heavy periods, also called heavy menstrual bleeding, (having to change one pad or tampon every hour) or periods that last longer than 7 days
-Heavy bleeding after childbirth or miscarriage
(National Bleeding Disorders Foundation)
-
Healthcare providers may treat this condition with different medications:
Desmopressin: This hormone boosts the levels of von Willebrand factor in your bloodstream. This is the most common treatment for von Willebrand disease.
Von Willebrand factor infusions: Some people may receive infusions of von Willebrand factor to stop bleeding episodes. They may receive this treatment before surgery. Some people with severe von Willebrand factor disease may receive regular infusions so they have a steady level of von Willebrand factor in their bloodstream.
Antifibrinolytics: These medications keep blood clots from breaking down. Your healthcare provider may prescribe this type of medication if you’re having dental surgery or if you’re someone who has heavy periods.
Birth control pills: This medication helps people with menstrual bleeding. It contains estrogen that increases von Willebrand factor levels in your bloodstream.
(Cleveland Clinic)