Detecting Von Willebrand's disease

June 3, 2009 3:21:20 PM PDT
Some women may be suffering from bleeding disorders and not even know it. That's because doctors aren't always looking for the condition.But now, there are new guidelines for doctors. And women who suffer from heavy menstrual cycles should also pay close attention.

Doctors from Duke University Medical Center and other international experts gathered at a symposium recently to discuss the problem and issue guidelines.

The clotting problem is known as Von Willibrand's disease. It exists when the blood is missing a clotting factor. It can be mild or severe. In people with Von Willibrand's, bleeding is often difficult to stop, so in women with an abnormally heavy periods, the possibility of this blood disorder is often overlooked.

Women and their doctors both need to see heavy uncontrollable bleeding as a possible sign of Von Willebrand's disease, say doctors writing in the American Journal of Obstetrics and Gynecology.

"There's now increasing recognition that many of these women who have excessive menstrual blood loss actually have an underlying...clotting problem," said Dr. Andrew Schafer, of New York Presbyterian-Weill Cornell Medical Center.

Researchers estimate that one in four women with heavy menstrual bleeding may have the undiagnosed disorder in which blood won't clot.

Studies say it takes women about 16 years to ultimately get diagnosed for the bleeding disorder, even if they've seen the signs.

Undiagnosed, it leaves women who may have it at risk for complications in pregnancy and childbirth.

"In childbirth, you can either have excessive bleeding after delivery...requiring transfusion or, in the really extreme case, a hysterectomy," Dr. Debra Taubel said.

Hemorrhaging after childbirth could be one of the signs of the disorder.

Others include:

  • Hard-to-stop bleeding after dentistry or after an injury
  • A family history of bleeding disorder
  • Unexpected surgical bleeding or notable bruising without injury

    "We do have patients that think this heavy bleeding or irregular bleeding is normal because they've had it for a long time," Dr. Taubel said. "If there's any concerns, they should speak to a gynecologist."

    Gynecologists often work with blood specialists, called hematologists, to do testing for for Von Willebrand's disease.

    Twenty-five-year-old Mayra Castro was tested after her heavy bleeding was suspected as the reason behind her fainting. Marissa Roslyn found out her excessive bleeding was caused by another common problem.

    "They drew tons of blood on me and said it was a hormonal imbalance," she said. "Now, the problem fixed, and I'm happy."

    Hormone issues or benign fibroid tumors of the uterus are a couple of the more common causes of heavy bleeding. Von Willibrands is a genetic disorder carried by 1 percent of people, but most have it in a mild form that never causes major problems. But if a woman has abnormal bleeding, it's a diagnosis to keep in mind.


    WEB PRODUCED BY: Bill King