March – Bleeding Disorder Awareness Month

Three Symptoms I Have with von Willebrand Disease

At PharmaFinders we love getting to partner with companies and people that get to be advocates and educators for so many areas of unmet need. All of the therapies we get to work in are exciting to us, however, each person at PharmaFinders has a specific area they love because it has more of an emotional connection for them. For me, that’s bleeding disorders.

As someone who has von Willebrand disease, and who had never met someone (outside of my family) that has it, I thought I was weird and alone… that was until, I started recruiting. Through the companies we’ve worked with, and the MSLs and Managers I’ve had the pleasure of building great relationships with, I’ve not only found a great community, but have also been able to learn more about my own bleeding disorder. For those of you that haven’t found your bleeding disorder community yet, the National Hemophilia Foundation, the Hemophilia Federation of America, and Hemophilia News Today are great resources to start.

In honor of bleeding disorder awareness month, and because everyone’s indicators for having a bleeding disorder can be different, I thought I’d share three of the biggest symptoms I have with my VWD:

1) Heavy and long-lasting nosebleeds – Although these aren’t nearly as bad as an adult, as a kid I was always out of commission because of nosebleeds. Sleepovers, theme parks, airplane rides, elevators, you name it – I was having a nosebleed there! As a kid with VWD it was always a little embarrassing having to be THAT kid that always had the nosebleeds. Luckily, I grew up with awesome friends and family that knew exactly how to step in and help.

2) Easily and always bruised– Ever since I can remember I have always had mysterious bruises all over my body, and sometimes they can be brutal looking. The most difficult part of these bruises isn’t actually having them, it’s having to explain to people that you’re ok, not harmed, and that it’s normal for you to have bruising – even if you have no clue where it came from. As tough as that is, I’m grateful that I’ve had so many people feel comfortable asking me about my bruises, and ultimately, it’s given me so many opportunities to tell people about VWD.

3) Prolonged bleeding – I am very fortunate that VWD doesn’t cause uncontrollable bleeding, and with how far clotting promoters have come, even the prolonged bleeding isn’t as bad. However, I do still experience prolonged bleeding, and most of the time it’s the smallest cuts or injuries (I’m looking at you, paper cuts!) that take the longest to stop bleeding.

Although I’ve learned so much through the relationships and hemophilia circle I already have, myself and PharmaFinders always want to learn more! Do you, or someone you know have a bleeding disorder? Join the discussion this bleeding disorder awareness month and help grow this community!

-Ashley

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Deanna Sauer
Deanna Sauer
10 months ago

Ashley! I am the mother of an 8 year VWD child. She is just at the beginning of her journey and I already see it with the nosebleeds. I feel so bad for her, but she is so mature about it. A new factor that causes nosebleeds for her is the face mask requirements. She gets so many more because of them and as you can imagine also has to have a few spare mask with her.