As Patrice Flax, MS, MSW, was chatting with the clerk at the checkout counter, she mentioned her appointment as education manager for the National Hemophilia Foundation’s (NHF’s) new Women’s Health and Bleeding Disorders Institute. Flax was eager to guide NHF’s efforts to raise awareness about von Willebrand disease (VWD) and other bleeding disorders among women. “One of my best friends has von Willebrand disease,” the clerk replied. “She has a daughter who’s 16 who has just been diagnosed.”
“These are the stories I want to hear,” Flax says. Prior to joining NHF in January 2010, she was a health educator at the University of Michigan. “I want to hear what women go through. That’s going to help me create work plans and projects.”
The new Women’s Health and Bleeding Disorders Institute is an outgrowth of Project Red Flag—Real talk about women’s bleeding disorders (PRF), an education and support program developed by chapter staff. PRF provides information and networking to women already diagnosed with bleeding disorders. The institute’s goals are to expand PRF outside the bleeding disorders community. To do this, the institute is developing a broad awareness campaign to reach undiagnosed women—in particular, those between the ages of 18 and 25. The institute receives funding from a Centers for Disease Control and Prevention (CDC) 5-year cooperative agreement, as well as from CSL Behring and Grifols.
Getting Help for Young Women
According to the CDC, up to 1% of people in the US have VWD but don’t know it.
“We want to target younger women,” says Kathleen Roach, MPH, MBA, NHF regional director of chapter services, who will lead the institute. “A study that the CDC conducted a few years ago showed that it takes about 16 years for a woman to be diagnosed with von Willebrand disease.”
Women are living with excessive bleeding and painful periods, being misdiagnosed or going undiagnosed for years. Earlier diagnosis helps prevent complications, such as unexpected and prolonged bleeding after surgery or childbirth, and unnecessary procedures like hysterectomies.
“If we can provide the education and awareness to younger people, that could save them many years of grief and misery,” Roach says.
Flax, who is based in Ann Arbor, Michigan, is eager to visit chapters and hemophilia treatment centers (HTCs). “I’m really looking forward to hearing from staff at the chapters and the HTCs, to learn more about what they’re seeing, what they’re struggling with,” Flax says. “More important, I want to hear from the women who have been diagnosed. They have a lot of expertise and information they can share about getting this information out to other women.”