Recently three well-known members of the bleeding disorders community met to discuss challenges and advances in diagnosis and treatment.
This dialogue is part of a series, sponsored by ZLB Behring, for patients, caregivers and healthcare professionals in the bleeding disorders community. |
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| Dr. Andra James: Men are just as likely as women to have von Willebrand disease, but women with VWD are at higher risk for severe or life-threatening bleeding episodes because of the regular bleeding challenges of ovulation, menstruation, and childbirth |
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| At ZLB Behring, our challenge is to educate the pediatricians, family physicians, obstetrician/gynecologists, as well as legislators and other policy-makers. As key thought leaders, policy-makers need to have this issue on their radar screens. |
| It’s well-known that hemophilia affects mostly males. But there’s a lesser known inherited bleeding disorder, von Willebrand disease, which occurs in both genders equally.
DR. ANDRA JAMES: Yes, men are just as likely as women to have von Willebrand disease, but women with VWD are at higher risk for severe or life-threatening bleeding episodes because of the bleeding challenges of ovulation, menstruation and childbirth. More than 2.5 million women in the United States are estimated to be affected by VWD, but the majority goes undiagnosed. Why is this so?
ANDRA: One explanation is that symptoms often manifest in the reproductive tract. Women with this condition may experience excessive bleeding related to menstruation, childbirth or other gynecologic issues. Excessive bleeding therefore gets attributed to a gynecologic condition, and an underlying bleeding disorder is rarely considered. So, there’s a lack of awareness on the part of providers, patients and health experts, in general. As we provide therapies for a number of comparatively rare diseases, we hear that underdiagnosis— owing to lack of awareness among both patients and healthcare professionals— is not unusual. DR. ALAN KINNIBURGH: A few years ago, NHF commissioned a Harris survey on women and bleeding disorders, which indicated that an alarming 91 percent of women had never heard of VWD, yet 31 percent reported experiencing “heavy” periods. Heavy periods is the No. 1 red flag symptom of von Willebrand disease. What efforts are being made to increase both awareness and diagnosis of VWD in women?
ALAN: To honor our commitment to this underserved population, the National Hemophilia Foundation established a public awareness program, Project Red Flag, to promote real talk about women’s bleeding disorders. Thanks to ZLB Behring, our founding sponsor, and other generous support, many of our chapters and other local organizations across the country have provided educational programs for women with bleeding disorders.
PAUL PERREAULT: I agree with Andra that women’s healthcare providers, as well as patients, need to understand that excessive gynecological bleeding is not normal. And women should not have to put up with this condition. To drive home this crucial message, ZLB Behring’s created a non-branded Web site, AllAboutBleeding.com. This site is used strictly to educate people, and especially women with bleeding disorders, about von Willebrand disease. That site receives more than 30,000 hits a month. There’s a real hunger for education on an issue like this. When it comes to VWD and other rare diseases, patients often take on the challenge of educating themselves. In addition to maintaining this cutting-edge Web site, ZLB Behring organizes weekend retreats for women with bleeding disorders, especially von Willebrand disease. We design these retreats for mothers and daughters since the condition frequently runs in families. Women who thought they were alone have an opportunity to meet other women who are coping with the same disorder. We bly believe that our grassroots efforts at providing education and cultivating networking really help get the word out.
What’s being done to educate healthcare providers about von Willebrand disease?
PAUL: As for educating physicians, I think it’s tougher, quite frankly, but it’s an area that we do focus on. We offer symposia at many conferences, often in conjunction with NHF’s Project Red Flag, trying to raise awareness among treaters. But educating physicians on women’s bleeding disorders is an uphill battle since VWD is almost never the first thing they think of when abnormal bleeding presents in women with menorrhagia. At ZLB Behring, our challenge is to educate the pediatricians, family physicians, obstetrician/gynecologists, as well as legislators and other policy-makers. As key thought leaders, policy-makers need to have this issue on their radar screens. Our message to them must be two-pronged: first, excessive gynecological bleeding may be a diagnosable, medically treatable problem; and second, although VWD might not be lifethreatening for all patients, it certainly can cause morbidity over time.
ANDRA: Obstetrician/gynecologists are trained as surgeons; we learn medicine on the side. As a result, we tend to crave surgical solutions to problems, and that’s not the appropriate approach to somebody with an inherited or underlying bleeding disorder. You can’t treat a surgical problem with medicine, and you can’t treat a medical problem with surgery. So OB/GYNs aren’t used to considering possible medical underpinnings of the gynecological bleeding conditions we deal with. |