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Data & Statistics

Prevalence

  • 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.

Diagnosis

Chart showing commonly reported bleeding problems among women with Von Willebrand Disease

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.

Treatment

  • 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

Complications

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.

References

  1. Rodeghiero F, Castaman G, Dini E. Epidemiological investigation of the prevalence of von Willebrand's disease. Blood. 1987 Feb;69(2):454-9.
  2. 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.
  3. 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.

 

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