Contact: Blaine Katz National Hemophilia Foundation 212/328-3719
Deborah Cohen Sandler Public Relations 212/675-4700, ext. 241

Up to 3% of U.S. women and girls may have von Willebrand disease,
quality of life compromised in millions...

PHILADELPHIA March 30, 1998 The healthcare community received a powerful message this weekend: before considering invasive surgery for a woman with abnormal uterine bleeding, rule out bleeding disorders.

The two-day National Hemophilia Foundation-sponsored conference focused on the underdiagnosis and undertreatment of women's bleeding disorders, including von Willebrand disease (vWD), thought to be the most common hereditary bleeding disorder, affecting up to 3% of the U.S. population.

vWD is a genetic disease affecting males and females. It is caused by a deficiency or a defect of a blood clotting protein, von Willebrand factor, crucial to blood clotting.

Symptoms of vWD include heavy and prolonged menstrual period bleeding, prolonged and frequent nosebleeds, easy bruising, and bleeding with toothbrushing or after dental or other surgery.

The National Hemophilia Foundation organized this conference for healthcare professionals because of concern over the risks associated with the misdiagnosis and undertreatment of vWD in women. Anyone with undiagnosed vWD is at risk for complications when involved in significant trauma or surgery. vWD can significantly impact a woman's quality of life and misdiagnosis can result in unnecessary procedures such as dilation and curettage (D&C), blood transfusions, and/or hysterectomy. Moderate to severe vWD (affecting approximately 500,000 women in the U.S.) can be debilitating and potentially life threatening if left untreated.

Unnecessary hysterectomies

According to the U.S. Centers for Disease Control and Prevention, about 5% (approximately 28,000 women per year) of hysterectomies are performed due to excessive uterine bleeding--bleeding that may be caused by vWD. Other studies conclude:

• As many as 20% of women with heavy menstrual bleeding have vWD;
• Up to 23% of women with vWD eventually have a hysterectomy;
• An estimated 20% of adolescents report problems with excessive menstrual bleeding.

Paul Brenner, M.D., Professor and Vice Chairman of the Department of Obstetrics and Gynecology at the University of Southern California, said, "When patients present with abnormal uterine bleeding, gynecologists must rule out bleeding disorders such as vWD." Dr. Brenner challenged conference attendees to preserve a woman's fertility, stating "It is up to us."

Reasons for misdiagnosis

Several factors contribute to the frequent misdiagnosis or dismissal of the disease:

• Many physicians are unfamiliar with vWD.
• Heavy menstrual bleeding is often considered a gynecologic rather than a hemotologic problem.
• Many people assume bleeding disorders, like hemophilia, only affect males.
• Testing can produce false negatives, and the symptoms can be masked by hormonal changes.
• A woman whose female family members have similar bleeding histories may ignore the symptoms and resign herself to "dealing with it."

Jeanne Lusher, M.D., Director, Division of Hematology/Oncology at Children's Hospital of Michigan and a professor at Wayne State University called the underdiagnosis of vWD "tragic" because treatment is available that is safe and user-friendly. "But, before we can decide on treatment, physicians must first begin by considering the possibility of vWD as an underlying cause," said Lusher.

The National Hemophilia Foundation is the nation's leading voluntary health agency representing individuals with hemophilia, von Willebrand disease, and other inherited bleeding disorders. Additional information can be obtained from NHF (1-800-424-2634).