Data & Statistics
- Von Willebrand disease (VWD) occurs with equal frequency among men and women, affecting up to 1% of the general population.1,2 However, women are more likely to experience symptoms of VWD because of the increased bleeding it causes during their menstrual periods, during pregnancy, and after childbirth.
In a CDC survey of women with VWD: [Read article]
- There was an average of 16 years between the onset of their bleeding symptoms and diagnosis of a bleeding disorder.
- Women reported an average of 6 bleeding symptoms before a diagnosis of VWD was made. Common symptoms included menorrhagia, bruising, nosebleeds, and bleeding from surgery, injury, and delivery. Menorrhagia was the most commonly reported symptom.
- To obtain the diagnosis of VWD, tests were carried out on average twice (range 1–20 times).
- 38% of women reported that they were first diagnosed by a Hemophilia Treatment Center (HTC) doctor. Among women diagnosed by a provider other than an HTC doctor, 42% were diagnosed by a hematologist, 28% by an internist or a family doctor and 19% by a gynecologist.
- The number of women seeking treatment at hemophilia treatment centers for bleeding disorders such as von Willebrand’s disease has increased by 50% during the past ten years, to more than 10,000 in 2009.3
In a CDC study of 102 women with VWD compared to 88 controls: [Read article]
- The most commonly reported bleeding symptoms among women with VWD were:
- Heavy menstrual bleeding (95%)
- Bleeding after minor injuries (92%)
- Excessive gum bleeding (76%)
- Excessive bleeding from a combination of three or more sites (e.g. nose, gum and uterus) or following procedures or injuries (e.g. dental, surgical, childbirth and minor injury) were reported in 74% of women with VWD and 6% of controls.
- 41% of women with VWD reported a diagnosis of migraine headaches compared with 13% of controls.
- 37% of women with VWD reported a diagnosis of arthritis compared with 15% of controls.
- 37% of women with VWD compared with 10% of controls indicated that their menstrual period limited routine work, social activities and had a negative effect on life.
- More women with VWD than controls in this study had undergone hysterectomy (25% vs. 9%).
- 28% of women with VWD and 11% of controls stated a perception of fair or poor health.
- Rodeghiero F, Castaman G, Dini E. Epidemiological investigation of the prevalence of von Willebrand's disease. Blood. 1987 Feb;69(2):454-9.
- Werner EJ, Broxson EH, Tucker EL, et al. Prevalence of von Willebrand disease in children: a multiethnic study. J Pediatr 1993 Dec; 123(6): 893-8.
- Baker JR, Riske B, Drake JH, Forsberg AD, Atwood R, Voutsis M, and Shearer R. US HemophiliaTreatment Center population trends 1990-2010: patient diagnoses, demographics, health services utilization. Haemophilia. 2012:1-6.
- Page last reviewed: March 20, 2015
- Page last updated: May 14, 2014
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