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October 8, 1997

New Focus Placed on von Willebrand Disease

JAMA. 1997;278(14):1137-1138. doi:10.1001/jama.1997.03550140027014

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FOR MANY patients, the heavy menstrual periods, frequent nosebleeds, and ease in bruising seem normal.

They likely have a sister or mother who also has heavy periods. Or a father or brother with nosebleeds or bleeding gums. "Because others in the family have it, they just think this is life," said Anne Dilley, PhD, an epidemiologist in the Hematologic Diseases Branch of the Centers for Disease Control and Prevention (CDC) in Atlanta, Ga.

Dilley is among a group of researchers, clinicians, and advocates who want to assure patients that excessive bleeding and bruising don't have to be a way of life. They're trying to focus more attention on the often unrecognized von Willebrand disease, an autosomal disorder characterized by mucous membrane bleeding.

As Dilley embarks on the last phase of the first large-scale epidemiologic study examining the prevalence of the bleeding disorder in women, the Food and Drug Administration (FDA)