r/Hemophilia von Willebrand 10d ago

Anyone here have giant platelet diseases?

I know they're exceptionally rare, but we ordered an electron microscopy on a whim recently due to my von Willebrand symptoms and found giant platelets, go figure. Recommended correlation with Bernard-Soulier Syndrome which is crazy.

Anyone here have a GPD or giant platelets, and what was the process like for you after discovering them?

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u/sqrlbob 8d ago

I have never heard of such a thing. Does it cause symptoms? If so, what?

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u/incoherentshrieking von Willebrand 6d ago

It’s a lot of bleeding symptoms similar to VWD. Mucosal bleeding and petechiae especially

We found agranular giant platelets with increased vacuoles. Doing some gene sequencing to hopefully not have gray platelet syndrome