The FINANCIAL — While an estimated 2.8 million Americans are affected by the most common hereditary bleeding disorder, von Willebrand disease (VWD), most don't even know they have it. VWD affects both men and women but, according to the Centers for Disease Control and Prevention (CDC), it takes a woman an average of 16 years to receive a diagnosis.
Now a group of mothers with VWD have joined together to focus attention on the need for more communication between mothers and their children about signs, symptoms and potentially severe health consequences of this disease.
"Growing up I never knew that what I was experiencing – the bruising and the heavy periods that would last for days – had a name," said Jeanette Cesta, 45, who wasn't diagnosed until she was in her 20s. "Because of my diagnosis I was able to ensure that my three children were tested early and received the proper treatment for their VWD."
The National Hemophilia Foundation's Project Red Flag campaign, Real Talk About Women's Bleeding Disorders, educates women about VWD by shining light on the signs and symptoms of the disease which can often present in childhood and puberty. Mothers with VWD are sharing their own stories of diagnosis and treatment to encourage more open communication and family awareness that easy bruising, frequent nosebleeds, and prolonged and heavy menstruation can be symptoms of the disease. Earlier diagnosis is crucial for women with VWD as they are at greater risk for such serious complications as miscarriage, life-threatening bleeding following surgery or childbirth, and undergoing unnecessary hysterectomies, even though their condition can be managed medically.
To help address these issues, The National Heart, Lung and Blood Institute (NHLBI), part of the National Institutes of Health (NIH) and the U.S. Department of Health and Human Services, recently issued the first-ever clinical guidelines for the diagnosis and treatment of VWD, providing health professionals with evidence-based recommendations on screening, diagnosis, disease management, and directions for future research.
"Von Willebrand disease can be diagnosed from the patient's history and the results of blood tests," said Peter Kouides, M.D, medical and research director of the Mary M. Gooley Hemophilia Treatment Center in Rochester, N.Y. "While there is no cure for VWD, treatment is available and can help prevent complications. But the disorder must be properly diagnosed."
Project Red Flag is NHF's national public awareness campaign created to educate women and their doctors about diagnosing and treating bleeding disorders, and it is supported by an educational grant from CSL Behring.
"Von Willebrand disease is a serious health issue for women," said Val Bias, chief executive officer of the National Hemophilia Foundation. "We encourage all women to increase their knowledge of bleeding disorders and to see their doctor immediately if they suspect they have symptoms."
Know the Five Signs of a Bleeding Disorder
Easy bruising of the limbs
Frequent or prolonged nosebleeds
Heavy menstrual periods
Prolonged bleeding after injury, childbirth or surgery
Prolonged bleeding during dental work
If you have one or more of these symptoms, contact your primary care physician. You may be need to be screened for a bleeding disorder.