Building Awareness About Von Willebrand Disease
Article Summary
- Von Willebrand disease (VWD) is the most common congenital bleeding disorder in the world.
- Despite its prevalance, many people, including some health care providers, do not know that VWD even exists.
- Dr. Fernando Corrales-Medina joined a team of VWD experts to create an online assessment to spread awareness about VWD.
Von Willebrand disease (VWD) is the most common congenital bleeding disorder in the world and could affect more than 3 million people in the U.S. Up to 90% of people with VWD are misdiagnosed or undiagnosed. Many people, including some medical providers, simply cannot identify abnormal bleeding.
“People may get frequent nosebleeds, bleed a lot from small cuts or have long and heavy menstrual periods. However, they may not think these symptoms might imply they have a bleeding disorder,” said Fernando Corrales-Medina, M.D., associate professor of clinical pediatrics and medical co-director of the Hemophilia Treatment Center at the University of Miami Miller School of Medicine. “The first step to optimize VWD diagnosis is to give people an objective way to understand what abnormal bleeding even looks like.”
To raise awareness about VWD and provide educational and diagnostic resources, Dr. Corrales-Medina and colleagues from around the world created VWDtest.com. The site provides key information about VWD as well as a bleeding assessment tool (BAT) that helps users assess their potential for a bleeding disorder.
The Consequences of Recurrent Bleeding
VWD is caused by a deficiency in von Willebrand factor, a protein that helps blood clot. The condition affects about 1% of the world’s population. Despite this high prevalence, many health care providers are not well-versed in VWD. Most people without medical training are unaware the condition exists.
VWD is an inherited disorder. People with VWD often grow up around relatives who experience similar bleeding issues. The symptoms can seem normal. But recurrent and severe bleeding can have major consequences.
For people with VWD, even a routine procedure, like a tonsillectomy, can cause dangerous blood loss, making early and timely diagnosis essential. VWD also causes heavy menstrual bleeding. But again, most women aren’t taught how to distinguish heavy bleeding from normal, particularly in cultures that consider menstruation a taboo topic.
“We all bleed at some point, whether it’s a cut while working in the kitchen, playing a sport or some other activity,” said Dr. Corrales-Medina. “But few people really understand whether the amount of bleeding is normal or not. And this can be quite dangerous.”
Online Bleeding Assessment
Dr. Corrales-Medina and Erik Berntorp, professor of clinical coagulation at Lund University in Malmo, Sweden, worked with 12 VWD experts to develop VWDtest.com. Dr. Corrales-Medina is the principal investigator.
The site is funded by an educational grant from Octapharma, which manufactures human proteins for clinical use. The website was launched in 2019 and has hosted 360,000 unique visitors from 147 countries. The website is available in 14 languages and has been optimized for smart phones.
The BAT offers a fast and easy way for people to gauge the severity of their bleeding. A high score triggers a message for users to see their medical providers. Around 20,000 people have taken the BAT and the test has identified approximately 5,800 people who may be at risk.
The site includes tailored information for women experiencing heavy menstrual bleeding, parents seeking guidance their child’s unusual bleeding and people who have already been diagnosed with VWD. Eighty percent of site visitors are women, so site updates emphasize their needs.
The VWDtest.com team is eyeing further expansion, potentially working with the World Federation of Hemophilia and other local and international partners to spread the word about VWD and congenital bleeding disorders.
Dr. Corrales-Medina has also established the Latin American von Willebrand Disease Academy that invites Latin American physicians and hematologists to the University of Miami to receive state-of-the-art training about VWD clinical characteristics, diagnosis and treatment.
“Our main goal is to help clinicians and people around the world recognize abnormal bleeding,” said Dr. Corrales-Medina. “Whether they have VWD or any other congenital bleeding disorder, we want them to get the care they need as early as possible. Even a routine surgical procedure can become a nightmare if the patient has an undiagnosed bleeding disorder. We want to do everything we can to avoid these dangerous situations and help improve quality of life for people with VWD.”
Tags: hematology, pediatrics