Executive Summary
Von Willebrand Disease (VWD) is a lifelong bleeding disorder that poses both physical and social challenges. For instance, minor injuries can result in significant blood loss, and frequent nosebleeds impact the patient’s well-being. The lack of empathy from others, on the other hand, amplifies the patients’ struggles while absenteeism both in education and work impedes their progress. Moreover, women are disproportionately affected by VWD, experiencing heavy menstrual bleeding and childbirth risks.
But given the absence of a cure, patients must endure VWD along with its physical and social consequences. Therefore, uniting for mutual support and open discussions about the condition is crucial. We invite you to join Ben’s Friends’ Von Willebrand Disease Online Support Group so you can get in touch with people who truly understand what you’re going through.
Introduction
Von Willebrand Disease (VWD) is a lifelong bleeding disorder that disrupts the process of blood clotting, leaving those affected vulnerable to prolonged bleeding episodes. This condition arises from a malfunction or diminished levels of Von Willebrand Factor (VWF), one of the proteins that aid in coagulation.
VWD manifests in three distinct types. In Type 1, patients have VWF levels that fall below the normal range, whereas in Type 3, individuals exhibit minimal to no VWF and reduced levels of factor VIII, another vital protein in blood-clotting. Comparing these two, Type 1 carries relatively milder symptoms and is also the most prevalent, while Type 3 affects a smaller percentage of patients but has a more severe or intense impact. When it comes to Type 2, even though the body produces regular levels of VWF, it doesn’t function properly. This type is further divided into subtypes (i.e. 2A, 2B, 2M, and 2N), each characterized by a specific issue in the person’s VWF.[1]
Know your family history! Most patients inherit the disorder from one or both parents. In some cases, however, an underlying medical issue triggered the disease and might not show up for years. And while VWD affects both men and women, it is the latter who are more inclined to recognize the symptoms due to irregular bleeding during their menstrual cycle and childbirth. [2]
VWD affects 3.2 million individuals in the United States and is considered by the Center for Disease Control and Prevention to be the most prevalent bleeding disorder. [3] Despite its prevalence, however, many patients remain undiagnosed or unaware of their condition.
Currently, there remains no cure for VWD, leaving patients dependent on available treatments to enhance their quality of life. Hence, individuals living with VWD must endure the substantial impact of this disorder, underscoring the importance of them coming together to offer mutual support and engage in open discussions about their experiences.
Physical Impact of VWD
VWD symptoms vary in intensity. While most patients experience mild symptoms, some individuals struggle with effects that significantly impact their daily lives. Seemingly minor injuries can trigger bleeding episodes, leading to substantial blood loss. Moreover, abnormal bleeds like frequent nosebleeds can be hard to control and impact overall well-being.
In more severe instances of VWD, internal bleeding may occur without any apparent external signs. This hidden bleeding can gradually compromise internal organs and tissues over time, potentially leading to long-term damage. Aside from this, VWD may lead to joint bleeding, which causes pain, swelling, and restricted mobility in the affected joints.
The risks become especially pronounced when awareness of the condition is lacking and the patient has to undergo a surgical procedure. Individuals with VWD are more susceptible to surgical bleeding, which can be life-threatening. Lack of awareness of their condition can hinder healthcare providers from implementing the required safeguards that could minimize the risk associated with surgery. This reality highlights the critical importance of proper diagnosis, awareness, and comprehensive care for individuals with VWD.
Social, Educational and Professional Impact
The social landscape for individuals with VWD often presents unique challenges. Children and teenagers may find themselves susceptible to bullying due to their noticeable symptoms, such as prolonged nosebleeds or frequent bruising. This, together with misconceptions and inappropriate questions from peers or acquaintances, can perpetuate a sense of isolation and contribute to the decision to refrain from socializing altogether.
Beyond the realm of social interactions, VWD can significantly influence an individual’s educational and professional journey. Absences from work or school can become a recurring theme, particularly if the individual requires frequent medical interventions, including dental procedures and infusions. The unpredictability of internal bleeding episodes further compounds the challenges of maintaining regular attendance, potentially affecting career advancement and financial stability.
For instance, a study conducted among individuals with type 3 VWD in the United States revealed that 40% of patients experienced absences from school/and or work due to bleeding episodes or other complications related to VWD. On average, these patients lost approximately 4.7 days per year. [4] A study of VWD patients in the Netherlands, on the other hand, found that adult patients diagnosed with type 3 VWD usually had a low educational level (52.9%) in contrast to those with type 1 (40.2%), type 2 VWD (36.8%), and the general population (36.4%). [5]
VWD’s impact on the patient’s social, educational, and professional life further emphasizes the need for awareness and support for affected individuals to navigate the multifaceted impact of this disorder.
Women’s Reproductive Health and Well-Being
While VWD can significantly affect the lives of all patients, the impact on women is particularly profound as the condition affects a fundamental aspect of their lives—menstruation. For many women with VWD, the monthly menstrual cycle becomes a challenging ordeal. The bleeding can persist for over 10 days, often accompanied by heavy flow that requires sanitary pad changes as often as twice or thrice per hour.
Aside from possibly causing anemia, heavy menstrual bleeding also takes a toll on the patient’s emotional well-being. The constant fear of unpredictable and excessive bleeding engenders stress, anxiety, and a sense of embarrassment.
Seeking relief, some women resort to drastic measures, such as undergoing a hysterectomy, a surgical procedure to remove the uterus. Choosing this route, however, is often laden with emotional considerations as it can signal the end of fertility.
Beyond menstruation, childbirth poses added worry for women with VWD. Heavy bleeding risk during childbirth can potentially turn what should be a joyous occasion into a fearful experience, even leading some to forgo motherhood altogether. This decision profoundly affects their lives, revealing VWD’s wider influence on family and personal aspirations.
Summary
VWD’s impact ranges from mild symptoms to significant effects. Beyond its physical manifestations, however, this condition comes with distinct social hurdles. Lack of empathy and understanding from others exacerbate the already daunting circumstances the patients face. Furthermore, VWD can have a huge impact on education and work, causing absences and hindering advancement.
But while VWD can significantly affect the lives of all patients, it can affect women disproportionately. The emotional toll of heavy and extended menstrual bleeding is considerable and childbirth presents the added risk of severe bleeding.
Unfortunately, there remains no cure for VWD, so individuals need to bear the condition’s physical and social effects. It is, therefore, crucial for patients to come together for mutual support and engage in open conversations about their condition. Ben’s Friends has a free and safe online support community for people affected by Von Willebrand Disease. Join our Von Willebrand Disease Online Support Group so you can get in touch with people who truly understand what you’re going through.
Available Resources for VWD
United States:
Von Willebrand Disease Online Support Group: Ben’s Friends’ online support group for patients, friends and families affected by Von Willebrand’s Disease
National Bleeding Disorders Foundation (NBDF): Formerly known as National Hemophilia Foundation (NHF), NBDF offers resources and support for individuals with blood and bleeding disorders including Von Willebrand Disease.
Hemophilia Federation of America (HFA): HFA provides information, advocacy, and assistance (e.g. emergency financial assistance, disaster relief, and scholarships) for individuals with bleeding disorders, including VWD.
Europe:
European Haemophilia Consortium (EHC): EHC advocates for people with bleeding disorders, including VWD, across Europe.
The Haemophilia Society: While centered on hemophilia, this UK-based organization also provides advocacy, resources, and support for those with VWD.
REFERENCE:
[1] Centers for Disease Control and Prevention (2023). What is von Willebrand Disease? What is von Willebrand Disease? | CDC
[2] Ibid.
[3] Ibid.
[4] Kempers, Eva K. et. al (March 2022) Social participation is reduced in type 3 Von Willebrand disease patients and in patients with a severe bleeding phenotype. Haemophilia. Volume28, Issue2, Pages 278-285 https://onlinelibrary.wiley.com/doi/10.1111/hae.14475
[5] Ibid.