RED BANK, N.J. – Although von Willebrand disease (VWD) is the most common hereditary bleeding disorder in the United States, affecting up to 1 percent of the population, it is often misdiagnosed or under-diagnosed in women. HealthyWomen, the nation’s leading nonprofit health information source for women, has developed new educational materials they hope will shine a light on a disorder that, when undiagnosed and untreated, can severely impact the quality of life for women.

Caused when von Willebrand factor, a protein in the blood that is necessary for clotting, is either missing or not working properly, VWD affects men and women equally. Yet, when undiagnosed and untreated in women, it puts them at a greater risk for life-threatening bleeding following childbirth and for undergoing unnecessary hysterectomies.

“Undiagnosed bleeding disorders, like von Willebrand disease, can have real health consequences for women,” said Elizabeth Battaglino Cahill, RN, executive director of HealthyWomen. “The goal of these new materials, available on HealthyWomen.org, is to spark honest conversations among mothers, sisters and daughters about the signs and symptoms of VWD and to hopefully underscore the need for even more education about this condition.”

The five signs and symptoms of von Willebrand disease are:

Easy bruising

Frequent or prolonged nosebleeds

Heavy, prolonged menstruation

Prolonged bleeding following injury or surgery

Prolonged bleeding during dental procedures

“Because VWD is a hereditary disorder, many women dismiss tell-tale signs like easy bruising or heavy periods as normal because their mother or other female relatives experienced similar symptoms,” said Meera Chitlur, M.D., Director, Hemophilia Treatment Center and Hemostasis Program, Children’s Hospital of Michigan and who also works with the Foundation for Women & Girls with Blood Disorders (FWGBD), a non-profit advocacy and education organization dedicated to advancing physician and healthcare provider knowledge of the unique needs and challenges faced by women and adolescent girls with blood disorders. “Unexplained bleeding or bruising is not normal and is something you should always discuss with your healthcare provider. If you are diagnosed with a bleeding disorder, treatments are available.”

The new materials include common questions about VWD answered by an expert, as well as real-life stories of women living with the condition. One of these women, Kristin Prior, 49, recalls her own diagnosis in 1996.

“While I had experienced many of the five signs and symptoms throughout early adulthood it wasn’t until I was 32 that I finally received my diagnosis of von Willebrand disease,” said Prior. “My hope is that women who are facing some of the same challenges that I did will read my story on HealthyWomen.org and realize that diagnosis and treatment can make a tremendous difference in their lives.”

The von Willebrand disease educational resources were developed through an educational grant from CSL Behring, a world leader in developing and manufacturing safe and effective solutions to treat and manage bleeding disorders.

About HealthyWomen

HealthyWomen (HW) is the nation’s leading nonprofit health information source for women. For more than 20 years, women have been coming to HW for answers to their most pressing and personal health care questions. HW provides health information through a wide array of online content and print publications that are original, objective and reviewed and approved by medical experts. Its website was recognized by ForbesWoman as one of the “Top 100 Websites for Women” in 2010 and 2011 and was named the top women’s health website by Dr. Mehmet Oz in O, The Oprah Magazine.

About the Foundation for Women & Girls with Blood Disorders

The Foundation for Women & Girls with Blood Disorders (FWGBD) is a non-profit advocacy and education organization dedicated to advancing physician and healthcare provider knowledge of the unique needs and challenges faced by women and adolescent girls with blood disorders. Founded in 2010, the Foundation’s mission is to ensure that all women and adolescent girls with blood disorders are correctly diagnosed and optimally treated and managed at every life stage.

Source: HealthyWomen

On World Hemophilia Day 2012 help us “Close the Gap” of care around the world. Together, we can work towards a day when treatment will be available for all globally.

On World Hemophilia Day we want to inspire people to help close the gap and to improve accessibility and quality of care so that Treatment for All becomes a reality.

Join the international bleeding disorders community on April 17 to mark World Hemophilia Day.

“The reality is that most people with hemophilia or other bleeding disorders do not receive adequate diagnosis, treatment, and management for their conditions,” said Mark Skinner, World Federation of Hemophilia (WFH) president. “This is important whether good treatment is already established but needs to be protected or where treatment needs to be improved.”

To learn more about hemophilia and what it is like to live with a bleeding disorder, visit www.wfh.org/whd/en

On World Hemophilia Day, help us Close the Gap.

About hemophilia and other bleeding disorders
Hemophilia, von Willebrand disease, inherited platelet disorders, and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning. People with hemophilia can experience uncontrolled internal bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death.

About the World Federation of Hemophilia (WFH)
For 50 years, the World Federation of Hemophilia, an international not-for-profit organization has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 118 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org

March 14, 2012

NEW YORK (GenomeWeb News) – Medical College of Wisconsin researchers have received a $10 million grant from the National Heart, Lung, and Blood Institute to continue a study of molecular and genetic factors involved in von Willebrand Disease, or VWD, the most common hereditary bleeding disorder.

MCW will use the five-year grant to further a clinical research project that involves 600 families, and other US and international partners, to learn more about the genes and clinical factors involved in causing a deficiency of von Willebrand factor, or VWF, which is required for normal blood clotting.

“There is a lack of understanding of the genetic causes of low or abnormal VWF, and the molecular mechanisms involved in the disorder,” principal investigator Robert Montgomery, a professor of pediatrics at MCW, said in a statement.

“While a large number of individuals have low VWF with abnormal bleeding symptoms, it is not scientifically clear if this is a disease, or if VWF is a continuous risk-factor for bleeding. For many practicing physicians, the general understanding of this group of disorders has not been optimal, and how to evaluate and treat these patients has been unclear.”

The project will study both VWD patients and carriers to learn more about how specific combinations of genes and genetic mutations affect families.

Seven primary clinical centers spread around the US will support the study, as well as 25 secondary clinical centers, and it will involve partners through subcontracts to Queens University in Canada and the University of Sheffield in the UK

Reason Baxter Healthcare Corporation is voluntarily recalling lot LE12LG70AC of GAMMAGARD LIQUID, [Immune Globulin Intravenous (Human)] 10%, 20g size, product code 1502797, NDC# 0944-2700-06. This recall is being conducted as a precautionary measure due to a labeling error noted on the product vial label and unit carton. The labels on the unit carton and product vials indicate an incorrect manufacturing date and expiry date.

Incorrect Manufacturing Date: November 25, 2011
Incorrect Expiration Date: November 25, 2014

Correct Manufacturing Date: November 5, 2011
Correct Expiration Date: November 5, 2014

The Food and Drug Administration has been notified of this action.

Considering the information noted above, the medical assessment into this issue concluded that this labeling error poses negligible safety risk to the patient. This labeling error has no impact on the functionality of the product. Furthermore, stability data indicates the difference of 20 days between the correct expiry date and the printed expiry date has no impact on the product quality. Therefore, if you have already used this product no action is required. However, if you still have any inventory of this product lot, we are asking you to return the product.
Action 1) Please check all product labels against the affected lot number.
2) Do not take this product. Return affected recalled lots to the point of purchase to receive replacement product.
Other Information If you need assistance, please call Stericycle, Inc. at 1-888-873-2838.

Washington, D.C. – In 1986, President Ronald Reagan designated the month of March as Hemophilia Awareness Month to bring awareness and attention to those living with a bleeding disorder. Hemophilia Federation of America (HFA) along with chapter organizations across the country commemorates March as National Hemophilia Awareness Month.

“National Hemophilia Awareness Month helps to bring public awareness about bleeding disorders and encourage the development of improved treatment,” said Kimberly Haugstad, Executive Director of HFA. “We are committed to addressing the evolving needs of the bleeding disorders community to help create a better quality of life for all persons with bleeding disorders.”

HFA encourages member organizations and patients affected by a bleeding disorders to spread the word about Hemophilia Awareness Month by posting messages on Facebook, Twitter, giving presentations in schools, and sharing information with their family and friends.

About Bleeding Disorders

Bleeding disorders are a group of conditions in which there is a problem with the body’s blood clotting process. These disorders can lead to heavy and prolonged bleeding, either spontaneously or after an injury. Individuals with bleeding disorders lead productive lives with regular and ongoing access to needed treatments, therapies and when specialized medical professionals are available.

About Hemophilia

Hemophilia is a sex-linked, hereditary blood clotting disorder that affects about 19,000 people nation-wide. In about one-third of the cases, there is no family history of the disorder. The underlying cause is missing or deficient protein — known as factor –that is needed for blood to clot. The bleeding can occur spontaneously and/or after injury. Bleeding episodes may be external or internal into joints, muscles, the abdominal cavity, the brain, and other organs. Untreated bleeds can lead to crippling deformities of the joints or life threatening bleeds within the body. Currently, there is no cure.

About von Willebrand

Von Willebrand Disease (vWD) is an inherited bleeding disorder with similarities to hemophilia. About 1-2% of the U.S. population — over 4.5 million people — are believed to have the condition. vWD is caused by a decreased or defective function of a protein called von Willebrand factor, which is necessary for normal blood clotting and affects men and women.

Resources:
•President Reagan’s proclamation that declares March as National Hemophilia Awareness Month
•HFA’s Press Release announcing National Hemophilia Awareness Month