Guest Voice: The VWD diagnosis that changed how we live
Our family lives more carefully and creatively, and with a bigger sense of humor
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I used to measure my daughter’s days in small, ordinary ways. Our house runs on routines, calendars, and controlled chaos, so I’d measure days by whether homework got finished, everyone ate something vaguely nutritious, and no one put the wrong food in the microwave.
Then there was the ice cream incident.
My daughter, Kendolyn, put the entire container of ice cream in the microwave to “soften it” so she could get the box open. She didn’t do this because she was being brilliant, but because her brain had completely checked out. It wasn’t a clever life hack; it was hardcore brain fog. The same thing led her to microwave ramen noodles without water — twice — nearly burning the house down both times.
Ice cream, at least, is a safer choice. Progress, I say!
At the time, we laughed, because if you don’t laugh, you cry, and because nothing actually caught fire that day.
I didn’t yet understand that these moments weren’t random. They were part of a much bigger picture. It was a time before I’d ever heard the words “von Willebrand disease,” (VWD), and before I’d learned that my daughter has iron-deficient anemia as a result of moderate to severe type 1 VWD. That diagnosis may sound tidy on paper; in real life, it is anything but.
Our road to diagnosis didn’t start where you might expect. It started with an abnormal sleep study. The results showed that my daughter’s body never really rested. She was having multiple involuntary muscle movements that kept her awake all night. What looked like insomnia was actually her body’s way of saying something was wrong.
Further lab work revealed critically low ferritin levels, which led to a hematology referral. That’s where we heard those words: “von Willebrand disease.”
VWD is often explained in shorthand: a bleeding disorder, usually manageable, sometimes inconvenient. For many families, it’s framed as no big deal — a condition you slap a Band-Aid on and move along.
But VWD doesn’t limit itself to bleeding alone. It shows up as bone-deep fatigue, the kind that doesn’t match activity levels; brain fog that turns everyday tasks into potential hazards; and healing and recovery times that stretch far longer than normal. These are things you don’t see in lab values, but you feel them constantly.
As a caregiver, I learned to measure life differently. I used to measure Kendolyn’s days by how much prompting it took to get through regular routines. I still do that, but now I also measure everything by time and distance: how many minutes an active bleed has lasted; how many hours she’s slept; how many days she’s missed of school. There’s also the monthly timing of her infusions and the distance to her treatment, specialized care, and finding answers when something doesn’t feel right.
The strength of community
We don’t live close to a hemophilia treatment center, as the nearest one is two hours away. There is local emergency care, but not expertise on VWD. When something goes wrong, there’s no quick reassurance from a familiar specialist down the road. There’s planning, calculating, and hoping the situation holds long enough to get to where we need to be.
Time and distance change how I parent. This means earlier decisions, lower thresholds, and constant mental math. It means weighing whether something can wait until morning or whether tonight becomes a long drive and a longer explanation. It means knowing that “just go to the emergency room” isn’t always simple when the people who understand my child’s condition are hours away.
It also means that our community — the people who truly get it — aren’t local, either. Our support doesn’t live next door. It lives in phone calls, messages, virtual meetings, and shared experiences across state lines. It’s built through advocacy organizations, online spaces, and late-night conversations with people who’ve walked similar paths.
Those connections matter more than I ever expected. These people understand why the words “it’s no big deal” make me flinch.
“Well, at least it’s not hemophilia.” “My cousin had that. It’s no big deal.” “She’ll be fine.”
Comments like that usually come from kindness, not cruelty. But they miss the daily vigilance, the invisible symptoms, and the reality of caring for a child whose diagnosis doesn’t fit neatly into a box.
What has surprised me most on this journey isn’t the hard parts. It’s the strength of a community that shows up, even from far away.
I still measure my daughter’s days by nights when the microwave is used correctly and the house is still standing. We’ve just added more grace through adaptability, resilience, and a willingness to navigate the fog together.
Moderate to severe type 1 von Willebrand disease didn’t change who my daughter is. It changed how we live — carefully, creatively, and with a sense of humor strong enough to survive melted ice cream.
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Note: Bleeding Disorders News is strictly a news and information website about the syndrome. 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 seek the advice of your physician or other qualified health 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 Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.
