Diagnosis key to treating von Willebrand disease.

• Position: Bleeding - Medical research

Although yon Willebrand disease (VWD) is the most-commonly inherited bleeding disorder, affecting approximately 3,000,000 Americans, few people--including physicians--are familiar with the condition. This lack of awareness may contribute to the low rate of diagnosis (It is estimated that over 99% of those with VWD have not been diagnosed.) Proper diagnosis provides a name and more importantly, an explanation for what makes someone with VWD "different." Contrary to what victims may have been told, their symptoms are not imaginary and knowing the cause allows them to come to terms with and take control of the, condition.

Unlike hemophilia, which as very rare in women, VWD affects men and women en equal numbers. However, its impact on females can be greater, especially when undiagnosed, due to their physiology. For women with VWD. menstrual periods are unusually long and heavy, often lasting longer than seven days and requiring the changing of tampons or pads more frequently than every two hours. If misdiagnosed, this can lead to unnecessary medical procedures, including hysterectomies, D&Cs (dilation and curretage), and endometrial ablation, as well as prolonged bleeding following childbirth.

Besides the medical implications, VWD can have a profound impact on women's daily lives--from self-esteem to intimacy--that makes appropriate diagnosis and treatment even more urgent Females who suffer from it regularly experience excessive or prolonged menstruation (menorrhagia) As a result, common experiences for many women--a fear of bleeding through clothes, playing sports, or a trip to the beach--are heightened. Menorrhagia also contributes to missed days of school or work, interrupting the education of girls and careers of women with VWD.

Unnecessary hysterectomies are frequent in those with misdiagnosed VWD because menorrhagia is misunderstood by many health care professionals. This procedure frequently happens to women as early as in their 20s and 30s. A fair proportion of women with undiagnosed VWD have undergone a hysterectomy for control of menorrhagia. One study found that seven percent of those who had a hysterectomy to control heavy menstrual bleeding were later diagnosed with VWD and...