Diagnosis Improves Quality of Life for Those With Bleeding Disorder

Published 11:34 am Tuesday, July 17, 2012

(NewsUSA) – As a little girl, Kristin Prior came to view what others may have seen as out of the ordinary as normal: The slightest tap or bump would result in a severe bruise, and nosebleeds came often and without warning. As a teenager and into adulthood, Kristin’s menstrual periods would be long, heavy and burdensome. Often, these symptoms kept her from taking part in activities with friends and family or left her worried about what she might encounter when she did.

Kristin was silently suffering from the most common hereditary bleeding disorder, von Willebrand disease (VWD). The U.S. Centers for Disease Control estimates that VWD affects up to 1 percent of the U.S. population, with many misdiagnosed or undiagnosed. VWD occurs when von Willebrand factor, a protein in the blood that is necessary for clotting, is either missing or not working properly.

The five most common signs and symptoms of von Willebrand disease are easy bruising; frequent or prolonged nosebleeds; heavy, prolonged menstruation; prolonged bleeding following injury, childbirth or surgery; and prolonged bleeding during dental procedures.

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“Although I was experiencing many of the five signs and symptoms of von Willebrand disease my entire life, I didn’t attribute them to an underlying condition,” said Kristin. “I was 32 years old when I was diagnosed with VWD. Having a name for what I had dealt with all those years and now being on an appropriate treatment has changed my life for the better.”

Kristin’s story is featured on HealthyWomen.org, the award-winning website of the nation’s leading nonprofit health information source for women. HealthyWomen has developed educational materials about the condition for women. The resources were developed through an educational grant from CSL Behring. For women, in particular, VWD can have serious health consequences. When undiagnosed in women, VWD can put them at increased risk for life-threatening bleeding following childbirth and unnecessary hysterectomies.

“Kristin’s story is representative of so many women who are unaware of bleeding disorders like VWD, yet have been negatively impacted by the symptoms for years,” said Elizabeth Battaglino Cahill, RN, Executive Director of HealthyWomen. “Our materials are designed to give women easy-to-understand information about VWD. Ultimately, we want to encourage women to listen to their bodies. Unexplained bleeding or bruising are not normal. If they are experiencing any of these signs and symptoms, women should speak to their healthcare provider.”

To learn more about von Willebrand disease, visit www.HealthyWomen.org.