Contrary to popular belief, you don't have to ha... - MPN Voice

MPN Voice

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Contrary to popular belief, you don't have to have a platelet count above 1 million to get aquired von Willebrand. Especially in PV.

clubdino profile image
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It has always been my understanding that testing for acquired Von Willebrand was not recommended until you reached a platelet count of 1 million. But after doing some deep digging in Google I found this study that reports most MPN patients had a platelet count under 1 million when they were diagnosed with acquired von Willebrand, especially PV patients. Testing for acquired von Willebrand is now recommended in all ET and PV patients.

sciencedirect.com/science/a...

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clubdino profile image
clubdino
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stillkicking profile image
stillkicking

That is interesting, and it does illustrate the need for those who look after us to consider numbers with care and a degree of thought! I do wonder sometimes how the magic numbers are arrived at in the first place, and can only guess that they must be the result of statistics, and such things are always a bit "blurry" round the edges (I assume that we don't all contain a "smart" counting gadget in our veins somewhere that goes.... "998,000... 999,000.... 1,000,000..... ah --ha -- better wake up Von Willebrand!")

:-) P

clubdino profile image
clubdino in reply to stillkicking

😄 Exactly! I think it's also important for new ET/PV patients to know because they usually just concentrate on their clot risk but never consider that their nosebleed or bleeding gums may be a symptom of their MPN.

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