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Young Women Urged to Recognize Symptoms of Widely Undiagnosed Bleeding Disorder

National Education Campaign Aims to Increase Awareness of Von Willebrand Disease

Austin, TX — 13 May 2010

To promote the importance of screening young women for von Willebrand disease (VWD), the American Academy of Nurse Practitioners (AANP) today announced the launch of its VWD Young Women’s Education Campaign. This educational initiative is designed to inform teenage girls and their healthcare providers about the five signs and symptoms of VWD, the most common hereditary bleeding disorder.

VWD is caused by a lack of working von Willebrand factor (VWF), a protein in the blood that is necessary for clotting. The Centers for Disease Control and Prevention (CDC) estimates that VWD affects one to two percent or three to six million people in the U.S. alone. While the disorder affects men and women equally, women are at a greater risk for miscarriage, life-threatening bleeding following childbirth, and for undergoing unnecessary hysterectomies.

“On average it takes women 16 years to receive a proper diagnosis of VWD because sometimes healthcare professionals interpret VWD symptoms as gynecologic, when in fact the underlying cause is hematologic,” said Josie Weiss, PhD, FNP-BC, Associate Professor, Christine E. Lynn College of Nursing at Florida Atlantic University and Fellow of the American Academy of Nurse Practitioners. “The teenage years are both the best time and provide the best opportunity to recognize von Willebrand disease because the onset of menstruation often reveals a commonly overlooked symptom – heavy and prolonged bleeding.”

The AANP urges young women to visit their healthcare provider if they are experiencing any of these five signs and symptoms of VWD:

  • Easy bruising
  • Frequent or prolonged nosebleeds
  • Heavy, prolonged menstruation
  • Prolonged bleeding following injury, childbirth or surgery
  • Prolonged bleeding during dental procedures

AANP’s VWD Young Women’s Education Campaign includes educational materials developed for both healthcare professionals and patients. These materials include VWD fact sheets, a screening questionnaire and links to hemophilia treatment centers (HTCs) that specialize in treating bleeding disorders. The virtual toolkit can be found in the AANP Toolkits section of the organization’s website.

This campaign is supported through an educational grant from CSL Behring, a leader in the plasma protein therapeutics industry. CSL Behring is committed to the bleeding disorders community through outreach, education, research and support of a wide variety of activities and programs including Von U, its VWD community of care.

More information about VWD and links to HTCs can be found at www.AANP.org or www.allaboutbleeding-US.com

About von Willebrand Disease (VWD)

Von Willebrand disease (VWD) is caused by a deficiency or abnormality of von Willebrand factor (VWF), a protein in the blood that is necessary for normal blood clotting. Men and women are equally likely to be affected by VWD. VWD is classified by types, ranging from Type 1 (the most common and mild) to Type 3 (the most severe).

Women with VWD are more likely to experience heavy, prolonged menstruation. Other common symptoms of VWD include frequent nosebleeds and easy bruising. Bleeding can be mild or serious and can occur as a result of injury, or without any obvious cause. More serious symptoms include bleeding into joints and internal organs. The VWD patient may require special care during dental procedures, surgery and childbirth.

Treatments for VWD may include desmopressin acetate to release stored von Willebrand factor, von Willebrand factor replacement therapies to raise von Willebrand factor in the bloodstream and oral contraceptives to reduce menstrual bleeding.

About the American Academy of Nurse Practitioners

Created in 1985 to provide nurse practitioners with a unified way to network and to advocate for nurse practitioner issues across all specialties at the local, state, and national levels, the American Academy of Nurse Practitioners (AANP) has continually served as a major resource for NPs, their patients and other healthcare consumers, to promote excellence in practice, education and research; to provide legislative leadership to advance health policy; to establish healthcare standards and to advocate for access to high-quality healthcare. AANP is the oldest, largest and only full-service national professional membership organization for NPs of all specialties, representing the interests of the 135,000 NPs practicing in the United States today. For more information about AANP, visit www.aanp.org.

About CSL Behring

CSL Behring is a leader in the plasma protein therapeutics industry. Committed to saving lives and improving the quality of life for people with rare and serious diseases, the company manufacturers and markets a range of plasma-derived and recombinant therapies worldwide. CSL Behring therapies are indicated for the treatment of coagulation disorders including hemophilia and von Willebrand disease, primary immune deficiencies and inherited respiratory disease. The company’s products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic diseases in newborns. CSL Behring operates one of the world’s largest plasma collection networks, CSL Plasma. CSL Behring is a subsidiary of CSL Limited (ASX: CSL), a biopharmaceutical company headquartered in Melbourne, Australia. For more information, visit www.cslbehring.com.

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Contact:
Greg Healy, Senior Manager, Communications & Public Relations
U.S. Commercial Operations
CSL Behring
610-878-4841
Greg.Healy@cslbehring.com

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