What Walks and Talks Like Hemophilia But Isn’t What You Think?

Von Willibrand Disease (VWD) is a bleeding disorder, not unlike hemophilia A and hemophilia B. But don’t be fooled. It’s very different.

It’s also the most common bleeding disorder on the spectrum, and people with certain blood types may be more prone to inheriting it.

VWD is a genetic disorder that causes a deficiency in the von Willibrand clotting factor, which means people with the disorder are prone to extended bleeding episodes. Women with VWD can have abnormally heavy menstrual periods, and both genders can suffer from frequent nose bleeds. Some people are asymptomatic and only experience mild symptoms. Typically, patients notice they bruise easily. Certain tests must be conducted to correctly diagnose VWD, including platelet studies, as well as a complete medical history.

While the majority of cases reported are genetic—and therefore passed down from generation to generation—there is also acquired VWD, which can result from autoimmune diseases like lupus.

Treatments include factor replacement therapy that includes desmopressin (DDAVP), which is indicated to treat against minor trauma, or in preparation for surgeries such as wisdom teeth removal. DDAVP helps to increase the coagulant factor up to five-fold and can be administered either by injection or via a nasal spray.

If you have VWD and would like to find a clinical trial in which to participate, contact Centerwatch.


Do you think people with von Willibrand disease get the support they deserve from the bleeding disorders community? Share your thoughts and experiences with Patient Worthy!

 

 

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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