A webinar for women that answers the all-too-familiar question, ‘Now what?’
After diagnosis, no one should have to figure out a bleeding disorder alone
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There’s a moment I’ve heard described so many times that it feels like a shared memory. A woman finally learns the name of the bleeding disorder she’s carried for so many years without answers. Perhaps it’s von Willebrand disease (VWD), or maybe it’s hemophilia. Then, the doctor’s appointment is over, the room empties, and she’s left with a diagnosis and a multitude of unanswered questions.
“Now what?” she wonders.
That question is the reason I’m hosting a webinar with the organization Girls Bleed Too on Tuesday, Aug. 4, called “VWD Diagnosed. Now What?” The featured speaker is Jennifer Hastie, a patient advocate with VWD type 2B whom I interviewed for this column back in 2024.
Jennifer’s path to diagnosis took decades. She bled in ways that didn’t make sense to the people treating her. Like many women, she’d be continuously sent home from doctor appointments without answers.
Eventually, she’d learn her diagnosis. But she also has two children with VWD, so she had to learn to advocate for both herself and her kids.
I find that part of her story to be particularly important. Bleeding disorders in women are often treated as a single-generation problem — a heavy period here, a hard delivery there — when they are frequently a family story.
A diagnosis is not the finish line
I was diagnosed as a child, which makes me one of the lucky ones. I’ve been in this community most of my life, and I’ve lost count of the women I’ve met who’ve spent decades being told their bleeding was normal, dramatic, or simply in their heads. By the time someone finally believed them, they’d already absorbed the idea that asking for help was out of the question.
That gap in care is what this webinar is built for. A diagnosis is not the finish line. Rather, it’s the first day of a different kind of work: finding a healthcare provider who actually understands bleeding disorders, learning what your body needs, and figuring out what to say and how to say it so that people will listen.
Jennifer will talk about things that don’t fit neatly into a typical doctor’s appointment: how she recognized her bleeding was abnormal and learned to trust that instinct; how she works with her healthcare team; which treatment approaches have helped her; and what she’s learned while raising children who share her diagnosis.
None of that is medical advice. It’s something arguably harder to find: the voice of someone who has lived through those experiences, talking plainly to people who are somewhere earlier on the same road.
The webinar is free and starts at 8 p.m. ET. When registering, you can submit questions ahead of time, and Jennifer will try to answer as many as she can during a live Q&A. I encourage you to send the hard questions, the ones you’ve been carrying since your own “Now what?” moment.
That’s the thing I keep coming back to, in this column and everywhere else: No one should have to figure out a bleeding disorder alone. We’ve spent enough time not being listened to. The least we can do now is talk to each other and make the road a little shorter for whoever has just been handed the name of a diagnosis and little else.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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