Most women with von Willebrand's disease, a common bleeding disorder that affects up to 5% of the population, are not diagnosed or treated, according to a recent Harris Interactive survey. The disease is genetic, can affect both women and men, and is caused by a deficiency of the von Willebrand factor, a blood clotting protein.
Symptoms of the disease include heavy and prolonged menstrual bleeding, prolonged and frequent nosebleeds, easy bruising, and bleeding during tooth brushing or after dental surgery. Many women report symptoms related to menstruation, including
* having periods that Last more than seven days (ie, 10% of women aged 18 to 45 who have menstrual periods),
* having heavy menstrual flow (ie, 33% of women who have periods), and
* bleeding through a tampon or sanitary napkin in an hour or Less (ie, 48% of women aged 18 to 45).
There are several reasons for the misdiagnosis of von Willebrand's disease or dismissal of its symptoms. Many physicians are unfamiliar with the disease, and heavy menstrual bleeding often is considered a gynecologic rather than hematologic problem. Many people have the misconception that bleeding disorders only affect men. Other causes for misdiagnosis include tests producing false-negative results, symptoms being masked by hormonal changes, and women with a family history of bleeding disorders ignoring the symptoms.
More than half of the women surveyed said they or someone they know had sought treatment from a physician for heavy menstrual bleeding--but none of these women were diagnosed with von Willebrand's disease. The top diagnoses were
* fibroids (25%),
* endometriosis (21%),
* hormonal imbalance (17%),
* no diagnosis (17%),
* polyps (8%), and
* cancer (3%).
According to the survey report, the Centers for Disease Control and Prevention believes 5% of hysterectomies are performed because of excessive uterine bleeding that may be caused by von Willebrand's disease.
This survey was conducted online in August 2003. A nationwide cross section of more than 1,000 women age 18 to 45 participated.
"Hereditary Needing disorder--von Willebrand Disease--seems to be widely underdiagnosed and undertreated," Health Care News 3 (Nov 24, 2003).
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