Hemophilia Treatment Centers (HTC)
Women’s Outreach Project
Thanks to a special outreach grant from the National Hemophilia Foundation (NHF),
we are pleased to announce a new outreach project to connect with women who may
have bleeding disorders in our community. Through this project, we plan to raise
awareness of women’s bleeding disorders in our tri-state area, and to help
direct those who may have a bleeding disorder where to go for information and
We will utilize this newsletter, the Veinline, and our website in an effort to
inform and educate people in our community. At targeted community events,
we will feature valuable information from our regional HTCs, and from Project
Red Flag (a national education and awareness campaign from NHF). Below are some
of the primary goals of this new outreach project:
If you or someone you know is concerned that they may have a bleeding disorder, please contact us today, or contact one of our regional HTC's closest to you.
HFMD is currently recruiting volunteers to help us carry out this project and to staff key events. IF YOU ARE INTERESTED IN VOLUNTEERING, PLEASE CALL OR EMAIL US TODAY – (651) 406-8655, or firstname.lastname@example.org
Survey Shows VWD Widely Undiagnosed
In August 2003, Harris Interactive conducted a survey for NHF that suggests that most women with von Willebrand disease (VWD) are not diagnosed or treated for it. Other research has suggested that up to 3% of women have VWD; not one of the 1,083 women in this nationwide survey had been diagnosed with this condition.
The Harris survey, which was conducted on behalf of NHF’s Project Red Flag: Real talk about women’s bleeding disorders, which is sponsored by Aventis Behring and the Centers for Disease Control and Prevention, found that many women report symptoms related to their periods, which is a possible indicator of a bleeding disorder. Ten percent of women in the sample reported that their periods last more than seven days, 33% described their menstrual flow as heavy and 48% have at one time bled through a tampon or napkin in an hour or less.
Drawing from these results, it’s clear that there is a discrepancy between woman’s symptoms and a doctor’s propensity to diagnose her. Just over half (54%) of the women surveyed reported that they or someone they knew had sought treatment from a doctor for a heavy period, however, not one of these women was diagnosed with VWD. Most commonly, they were diagnosed as having fibroids (25%), endometriosis (21%), hormonal imbalance (17%), polyps (8%) and cancer (3%). In 17% of these women no diagnosis was made. The survey also found that only 9% of women had even heard of VWD, and if there is a family history of similar menstrual problems, a woman is likely to ignore the symptoms and resign herself to just “deal with it.”
A similar problem exists within the medical profession. Many physicians are unfamiliar with VWD as well and think of heavy menstrual bleeding as a gynecologic rather than a hematologic problem. When many doctors think of bleeding disorders, they assume they only affect males. Should a doctor decide to perform tests for VWD, false negatives can occur, and menstrual problems are then attributed to hormonal changes.
Copies of the Harris survey can be obtained by contacting Anna DeSimone, education coordinator of Project Red Flag at (800) 424-2634, ext. 3705
Reprinted with consent from NHF