Living with Von Willebrand Disease Type 2B: A Patient’s Journey
By: Jennifer DeGlopper
Living with a bleeding disorder is an intricate, exhausting, and often lonely experience, as one patient with Von Willebrand Disease (VWD) Type 2B shares in her candid reflection. Jennifer Hastie’s story is not only a testament to resilience but also highlights the need for proper diagnosis, treatment, and advocacy within the bleeding disorder community.
A Family Legacy of Bleeding
Jennifer’s journey began early. “My oldest and youngest daughters have it too,” she says. “My mother likely has it, but she refused to be tested so as not to be blamed, as she put it.” This generational thread underscores the genetic nature of VWD, though her own path to diagnosis was anything but straightforward.
A Lifetime Without Answers
“I had my first surgery for a hernia at age four,” she recalls. “The doctor told my parents I should never take aspirin, but they never followed up.” For decades, she endured symptoms without an official diagnosis, avoiding aspirin and NSAIDs on instinct. It wasn’t until age 56—following extensive genetic testing—that she finally received a formal diagnosis.
Her daughters were diagnosed much earlier, at 5 years and 18 months old. “At first, my oldest was typed as Type 1, but they re-typed her later based on her sister’s diagnosis and follow-up labs.”
The Challenges of Diagnosis
Securing a diagnosis was an uphill battle. “I saw four hematologists in Tampa before I found one who took me seriously,” she shares. “It was frustrating knowing that my symptoms were just as severe as my daughters’, but without medical records—since they weren’t digital back then—there was no proof.”
The complexity of VWD Type 2B, where stress, exercise, and other factors can skew test results, made things worse. “I was genetically tested for 2B twice, and both times it showed I had it. But my hematologist initially didn’t believe the results, thinking the lab wasn’t reputable.” Complicating matters further, prior labs dismissed her diagnosis due to elevated levels that masked her bleeding tendency.
Living with VWD Type 2B: A Painful Reality
The physical toll of VWD 2B was severe. “I had horrific nosebleeds that lasted all night and heavy periods that could stretch for nearly three months,” she recounts. “At school, I’d bleed through my jeans and have to tie a jacket around my waist to hide the stains.”
The menstrual bleeding left her physically and emotionally drained. “By the end of my longest period, I was so exhausted I thought I would die.” Miscarriages and anemia compounded her challenges, while her struggles with ulcers in college forced her to take a break from her studies.
Despite these hardships, she persisted. “I underwent a total knee replacement in 2020, but my hematologist at the time didn’t think factor treatment was necessary. Instead, I was prescribed baby aspirin and Meloxicam.” Her knee deteriorated over time, and it wasn’t until years later, when her new hematologist reviewed post-surgery imaging, that the true extent of her condition—ongoing hemarthrosis—was confirmed.
Misconceptions and Misdiagnoses: The Battle for Recognition
Navigating misconceptions about her disorder was one of the toughest parts of Jennifer’s journey. “I was told by three different Tampa hematologists that I couldn’t possibly have a bleeding disorder because my levels were ‘normal,’” she says. “I tried explaining how stress and exercise could raise my levels, but they dismissed me.”
It was only after years of persistence that she found answers. “When my oldest daughter switched to my primary care provider, the nurse practitioner connected the dots. She asked if I had the same bleeding disorder as my daughter and immediately ordered a genetic test. That test confirmed I had VWD Type 2B.” Reflecting on the journey, she adds, “It’s fascinating—and frustrating—that none of the hematologists I saw ever thought to run genetic tests.”
Advice to the Not Yet Diagnosed: Don’t Give Up
Asked what advice she would give to someone not yet diagnosed, her message is clear: “Don’t give up.” She emphasizes the importance of documenting symptoms. “Take pictures of your bruises. Outline them with a permanent marker. If they grow beyond the marked area, you’ll have visual proof for your doctor.” Documentation, she believes, is critical. “Upload these pictures to the patient portal—once they’re part of your medical record, they’re harder to ignore.”
For her, the need for early intervention is also paramount. “If I had access to factor earlier in life, I wouldn’t be in the physical shape I’m in today. I use a cane now, and my knee is permanently damaged. I also have neuropathy in my legs, making me prone to falls.”
A Message of Hope and Persistence
Despite years of misdiagnoses and dismissals, she urges others to persist in their search for proper care. “You live in your body every day—you are the expert. Don’t let anyone tell you otherwise.” She acknowledges the emotional toll of advocacy but encourages patients not to give up. “There were many times I wanted to quit, but I kept pushing through, and now I’m glad I did.”
For her, finding the right hematologist made all the difference as has prophy. “There are many great doctors out there—you just need to keep looking until you find the one who will listen.”
Jennifer’s story is a powerful reminder of the importance of self-advocacy, persistence, and proper care in managing chronic health conditions. “For me, getting the right treatment wasn’t just life-changing—it was life-affirming.”