“I thought everybody bled like that”: a patient’s experience with von Willebrand disease
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* Andreas Laupacis

[See related article at www.cmaj.ca/lookup/doi/10.1503/cmaj.220629](http://www.cmaj.ca/lookup/volpage/194/E1135)

As a kid, I had frequent nosebleeds and bruising. Sometimes, I’d have nosebleeds daily and need to apply pressure for 20–30 minutes. That’s what I was known for. As I got older, I’d get bruises on my legs or arms. I always had a bruise somewhere.

When I had my periods, there would be clotting and gushing. If I was sitting and went to stand, I worried I would leak through my clothes. I’d be terrified sometimes because I wouldn’t know if what I had on would handle the transition to the bathroom. I recall once wearing a dress and leaking all over the floor. I missed work and school occasionally, but it’s not possible to miss days that frequently. Instead, I’d figure out what to wear, how to double up and where the nearest bathroom was.

I did not ask my doctor about my periods or about my bruising. I thought everybody bled like that. My normal was my normal.

I was diagnosed with “mild” von Willebrand disease (VWD) after a minor medical procedure when I hemorrhaged and had to be hospitalized for a week. I don’t think I would have called it “mild” when I constantly worried about gushing or when I had to be hospitalized.

I was told to inform medical practitioners about my diagnosis before any procedures, but I got no management advice. I only began to learn more after I was referred to a bleeding disorder clinic, like using tranexamic acid to help when I bleed. I’m better equipped now. I have someone to call, my medical alert bracelet, my FactorFirst wallet card1 and my card from the bleeding disorder clinic that outlines my appropriate treatment plan.

Every time I’ve informed somebody of my VWD, I’ve heard, “It’s fine. That’ll be no big deal.” One time, I needed a polyp removed and asked my clinic if there was a recommended course of treatment. There was, but the gynecologist said I didn’t need it. I felt like there was a battle about whether this was necessary. The clinic was successful at ensuring I had the appropriate treatment, but I remember feeling very nervous going into surgery with someone who wasn’t happy. But I can tell you that it was the first time I’ve ever left a day surgery on time without bleeding issues.

It would be phenomenal if general practitioners had the Self-Bleeding Assessment Tool2 to administer when they ask patients about bleeding. I got asked, “When was your last period?” but never, “What does your period look like? What is the amount?” For most menstruators, whatever bleeding you’re experiencing feels normal to you. We need more resources, like heroixx.ca,3 to learn about bleeding disorders. — Interviewee wished to remain anonymous

In Their Own Words provide extracts of interviews held between *CMAJ* staff and patients, families or clinicians. They are usually linked to an article appearing in the Practice section and are intended to provide complementary perspectives.

## Footnotes

*   Consent has been given for this perspective to be shared.

*   **Competing interests:** The interviewee has been involved in the website [www.heroixx.ca](http://www.heroixx.ca).

*   This article has not been peer reviewed.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4.0) licence, which permits use, distribution and reproduction in any medium, provided that the original publication is properly cited, the use is noncommercial (i.e., research or educational use), and no modifications or adaptations are made. See: [https://creativecommons.org/licenses/by-nc-nd/4.0/](https://creativecommons.org/licenses/by-nc-nd/4.0/)

## References

1.  Emergency care for patients with hemophilia and von Willebrand disease. Montréal (QC): Canadian Hemophilia Society. Available: [https://www.hemophilia.ca/emergency/#:~:text=TheFactorFirst wallet card is, staff when accessing emergency care](https://www.hemophilia.ca/emergency/#:~:text=TheFactorFirstwalletcardis,staffwhenaccessingemergencycare) (accessed 2022 July 19).
    
    

2.  Let’s Talk Period. Self-BAT [website]. Kingston (ON): Queen’s University; 2022. Available: [https://letstalkperiod.ca/self-bat/](https://letstalkperiod.ca/self-bat/) (accessed 2022 July 19).
    
    

3.  Heroixx [website]. Toronto: Hemophilia Ontario. Available: [https://heroixx.ca/](https://heroixx.ca/) (accessed 2022 July 31).