Diagnosing von Willebrand disease (VWD) is challenging and complex. Here are a few reasons why, according to a recent article in the journal Haemophilia:
- The bleeding disorder has three types and various subtypes – and there’s some debate about the criteria for making a diagnosis.
- Von Willebrand Disease – which can cause easy bruising, nosebleeds, heavy menstrual flow and other bleeding problems – is neither well known nor well understood. Like hemophilia, it’s caused by a lack of a particular clotting factor in the blood.
- Not all health care systems, especially those in poorer countries, are equipped to diagnose it.
Given those challenges and more, it has been difficult to get a firm grasp on how many people have von Willebrand disease, believed to be the most common inherited bleeding disorder. Previous estimates were that 1% of the population had VWD.
The new analysis published in June examined the prevalence of VWD in more than 100 countries of varying income levels. Researchers compiled data from the World Federation of Hemophilia (WFH) Annual Global Survey of 136 countries and national registries from Australia, Canada and the United Kingdom.
The researchers found wide variations. Reported cases of VWD in wealthier countries with more mature health care systems were as high as 60 cases per million. Poorer nations with less infrastructure for diagnosing and treating such conditions reported as little as one or two cases per million.
“The VWD prevalence was likely less for lower income countries because of limited healthcare resources as well as social or cultural issues related to bleeding in women,” the researchers wrote.
In some parts of the world, menstruation is now discussed more openly due to attitude shifts about women’s health. But the topic continues to carry stigma in other cultures, which could inhibit a woman from talking about problems with her period that could be VWD symptoms. Regardless of income level, countries reported more cases of VWD in women than in men, according to the research.
Though the researchers couldn’t estimate the true prevalence of VWD, they said “enhancing awareness, diagnostic capabilities of VWD, and better data collection systems will go a long way toward addressing the ‘true’ prevalence of VWD.”