Von Willebrand disease and women

Signs, symptoms, and why advocacy matters for women with Von Willebrand disease

What is Von Willebrand disease?

Von Willebrand Disease (VWD) is the most common inherited bleeding disorder, affecting up to 1% of the population². Despite its prevalence, it remains widely underdiagnosed, especially among women. Women with VWD often experience more severe symptoms due to menstruation, pregnancy, and childbirth, making early diagnosis and proper treatment essential.

‍

Prevalence of VWD

VWD affects men and women equally, but its impact on women is often more pronounced due to hormonal and reproductive factors. It has been estimated that:

• Up to 24% of women with heavy menstrual bleeding may have VWD¹.
• It is more common in Caucasian women (15.9%) compared to African American women (1.3%)¹.

Despite these statistics, women often face delays in diagnosis, with an average wait time of 16 years from the onset of symptoms².

‍

Recognizing the symptoms

Symptoms of VWD can vary widely, but women should be especially alert to the following signs:

• Heavy Menstrual Bleeding (74-92%) – Periods lasting longer than 7 days, soaking through pads or tampons within hours¹.
• Frequent Nosebleeds (38-63%) – Bleeding that occurs without an apparent cause¹.
• Gum Bleeding (26-35%) – Prolonged bleeding after brushing or dental work¹.
• Excessive Bleeding After Surgery or Injury (92%) – Difficulty clotting after minor cuts or medical procedures².

One patient we partner with described years of suffering heavy periods and frequent nosebleeds before finally receiving a diagnosis. She highlighted the frustration of being dismissed by doctors and emphasized how advocating for herself led to proper testing and treatment. Her story underscores the importance of persistence and self-advocacy.

‍

Why diagnosis can be challenging

Diagnosing VWD involves more than a simple blood test. It often requires a combination of medical history, physical exams, and specialized laboratory testing. Screening guidelines recommend evaluating all women with heavy menstrual bleeding, regardless of age. However, many women and their care teams are not aware of these guidelines.

Women face diagnostic delays due to:

• Lack of awareness among healthcare providers.
• Complexity of testing.
• Dismissal of symptoms as "normal" menstrual variation.

‍

Treatment options for women with VWD

Effective management of VWD often requires a multidisciplinary approach involving obstetrician-gynecologists and hematologists. Treatment options include:

• Hormonal Therapies: Oral contraceptives, intrauterine devices (IUDs), and progestin-only options to reduce menstrual bleeding.
• Non-Hormonal Therapies: Tranexamic acid (an antifibrinolytic agent) and desmopressin acetate to promote clotting.
• Advanced Treatments: Recombinant factor VIII or von Willebrand factor (vWF) infusions for severe cases¹.

Specialized care is also crucial during pregnancy and delivery, where bleeding risks increase. With proper planning, most women with VWD can have healthy pregnancies and deliveries.

‍

Emerging clinical trials for VWD

Exciting advancements in VWD treatment are underway. New clinical trials, such as the Prospective, Screening Study of Bleeding and Treatment in Participants With Von Willebrand Disease sponsored by Hemab ApS, are investigating innovative therapies to improve outcomes for VWD patients. For more information, visit the clinical trial listing on ClinicalTrials.gov.

‍

Why advocacy is critical

Too often, women with VWD are dismissed or misdiagnosed, leaving them without the care they need. Raising awareness and pushing for early screening can change this.

‍

"If you feel something is wrong, find someone who will listen. You know your body best." - Grace, patient with VWD

‍

This quote from Grace, a patient living with VWD, highlights the importance of persistence in seeking answers. Advocacy doesn’t just benefit individuals—it helps create systemic changes that improve awareness and screening practices.

‍

Steps to take if you suspect VWD

1. Track Your Symptoms: Keep a log of heavy periods, nosebleeds, or other bleeding concerns.
2. Talk to Your Doctor: Request specific testing for bleeding disorders if you experience symptoms.
3. Seek Specialists: Consult a hematologist or gynecologist familiar with VWD.
4. Join Support Groups: Connect with others who have VWD to share experiences and tips. There are also online communities that can help foster connection amongst the VWD community, such as https://www.reddit.com/r/VonWillebrand/
5. Review Resources: There are many online resources women can leverage to better understand VWD, such as the Hemophilia Federation of America.

‍

Final thoughts

Von Willebrand Disease may be common, but its impact on women often goes unnoticed. By recognizing symptoms early and pushing for proper testing, women can gain control of their health and improve their quality of life.

‍

If you or someone you know experiences unexplained heavy bleeding, don’t wait—advocate for yourself and get tested. Early diagnosis can make all the difference. If you would like to help the community and get access to resources and information regarding VWD, please complete our survey for individuals with Von Willebrand disease.

‍