Women with undiagnosed bleeding disorders may suffer unknowingly and unnecessarily from heavy menstrual bleeding and bleeding from the female reproductive tract.
Delays in diagnosis
Data from the
Centers for Disease Control and Prevention indicate that it takes an average of 16 years until a woman is diagnosed with von Willebrand Disease (vWD). Delay in diagnosis may be a combination of general physician awareness and underreporting of symptoms by affected females. Women may dismiss symptoms such as periods that last weeks and soak tampons and pads within one hour as normal because a mother and grandmother had the same experience.
Similarly, symptoms of female hemophilia carriers may be overlooked or not taken seriously. Bleeding in carriers can occur with low factor VIII or factor IX levels through "extreme lyonization" (read more about this under the heading Hemophilia Carrier), or be aggravated by other coexisting bleeding disorders.
Delayed diagnosis or misdiagnosis is tragic, with serious health consequences and a profound impact on quality of life for women with bleeding disorders, especially since very effective treatments are now available. (The first index case of vWD, who was examined at age 5 and reported by the Finish physician Erik von Willebrand in 1926, died at age 12 from unstoppable bleeding at her first menstruation. Several other of her siblings had also bled to death.) However, not every form of vWD is that severe. We now know three types of vWD (type I, II and III), with variations in severity from asymptomatic to catastrophic bleeding.
Victory for Women campaign
Victory for Women campaign launched by the National Hemophilia Foundation in collaboration with the Centers for Disease Control and Prevention (CDC), aims to target and educate three key audiences: young women ages 18 to 25, mothers of girls ages 13 to 18, and healthcare and education professionals.
UC San Diego's Hemophilia and Thrombosis Treatment Center is aware and supportive of this effort. Programs for community outreach, awareness, diagnosis and treatment are underway.
Resources and Links