Von Willebrand's Disease

Oct 19, 2005 11:29 AM

For persons with hemophilia and other bleeding disorders Anyone in need of emergency medical assistance should call 911 or go to your nearest hospital emergency room. For patients and families from the Louisiana Comprehensive Hemophilia Center: If you are in need of factor products please call Gulf States Hemophilia and Thrombophilia Center in Houston, TX 800-464-1440 713-500-8360If you need a consultation from the Louisiana Comprehensive Hemophilia Center, please call any of the following numbers and please keep trying until you get through:573-582-0826 504-390-2057 504-390-2152 Anyone who has been relocated to the Houston area contact the Gulf States Hemophilia and Thrombosis Center at 713.500.8360. They can provide treatment and referral. If you have been relocated to the Southeast, contact one of the following: The Emory University hemophilia and thrombophilia office in Atlanta at 404.727.1608 during the day or 404.778.5000 in the evening. University of Alabama, Birmingham Medical Center at 205.939.9285. If you have been relocated to the Southeast, contact one of the following: The Emory University hemophilia and thrombophilia office in Atlanta at 404.727.1608 during the day or 404.778.5000 in the evening. University of Alabama, Birmingham Medical Center at 205.939.9285. University of Mississippi Medical Center in Jackson, Pediatric Hematology/Oncology at 601.984.2716. Phone service there is erratic, but the center is open and operating. For a full list of federally-funded Hemophilia Treatment Centers, click here. If you need more information, please contact the National Hemophilia Foundation Information Resource Center – HANDI – at 800-42-HANDI.

Hemophilia

Hemophilia is an inherited bleeding disorder that affects 18,000 persons (primarily males) in the United States. The disorder results from deficiencies in blood clotting factors and can lead to spontaneous internal bleeding and bleeding following injuries or surgery. These bleeding episodes can cause severe joint damage, neurological damage, damage to other organ systems involved in the hemorrhage, and, in rare cases, death. Treating the bleeding episodes involves the prompt and proper use of clotting factor concentrates.

von Willebrand disease

The most common bleeding disorder is von Willebrand disease (vWD), which is found in approximately 1-2% of the U.S. population. VWD results from a deficiency or defect in the body's ability to make von Willebrand factor, a protein that helps blood clot. Although VWD occurs in men and women equally, women are more likely to notice the symptoms because of heavy or abnormal bleeding during their menstrual periods and after childbirth.

Prevention activities

• CDC helps support a network of hemophilia treatment centers (HTCs). This network promotes the management, treatment, and prevention of complications experienced by persons with hemophilia and other hereditary bleeding disorders.

• CDC has established a surveillance system, the Universal Data Collection project, to monitor blood safety and to conduct research on health-care outcomes. The system is integrated into the HTC network.

For more information

Locate an HTC

HTC Directory and Universal Data Collection project database

Publications
Blood safety fact sheet PDF format (15 KB)

Basic Concepts of Hemophilia: Guide for hemophilia health-care providers (538 KB)

Basic Concepts of Hemophilia: Self-study workbook for families (available by mail from the National Hemophilia Foundation)

Soucie JM, Symons J 4th, Evatt B, Brettler D, Huszti H, Linden J, and the Hemophilia Surveillance System Project Investigators. Home-based factor infusion therapy and hospitalization for bleeding complications among males with haemophilia. Haemophilia 2001;7(2):198-206.

Soucie JM, Nuss R, Evatt B, Abdelhak A, Cowan L, Hill H, Kolakoski M, Wilber N, and the Hemophilia Surveillance System Project Investigators. Mortality among males with hemophilia: relations with source of medical care. Blood 2000;96:437-442

Soucie JM, Evatt B, Jackson D, and the Hemophilia Surveillance System Project Investigators. Occurrence of hemophilia in the United States. Am J Hematol 1998;59:288-294.

OrganizationsNational Hemophilia Foundation

• information on types of bleeding disorders

World Federation of Hemophilia

International Society on Thrombosis and Haemostasis

American Society of Hematology