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von Willebrand Disease Community
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Avatar universal

In need of help!

My name is Gabby, I'm 17 years old. I was diagnosed with vwd 5 years ago.I've struggled tremendously with this disease. I get infusions twice a week and occasional blood transfusions. I've been on my menstrual period since October of 2015. They have not found anything that has stopped my bleeding. I've tried Lysteda, Stimate, Humate-P and multiple other coagulants. Since I get infusions so often my family doctor suggested I get a surgically implanted port or a picc line. My hematologist thinks I'm too unstable. I bruise like a peach and my joints are constantly in pain. I have no idea what else I can do.
2 Responses
Avatar universal
2014! not 2015! my Bad
Avatar universal
My daughter has type 3 Von willebrands disease and she takes a hormone replacement called aygestin. It has stopped her period.
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