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Anyone w/ both AL Amyloidosis & Acquired Von Willebrand Syndrome?

Blood Cancers & Disorders | Last Active: Dec 5 4:02pm | Replies (2)
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@colleenyoung

Hi @marykatr, your post led me to do a bit of internet searching. I learned that Acquired von Willebrand syndrome almost always occurs in association with an underlying disorder.

- Association of Acquired Von Willebrand Syndrome with Primary (AL) Amyloidosis https://ashpublications.org/blood/article/106/11/4078/122735/Association-of-Acquired-Von-Willebrand-Syndrome

Was your husband first diagnosed with AL Amyloidosis and then von Willebrand syndrome or were they discovered at the same time? What symptoms led to his diagnosis?

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Replies to "Hi @marykatr, your post led me to do a bit of internet searching. I learned that..."
marykatr | @marykatr | Dec 5 4:02pm

yes, what you learned is correct. The AvWS was diagnosed first, and when the usual suspects were ruled out (lupus, myeloma, etc), I knew it had to be Amyloidosis (based on the rule-outs & symptoms). It took me another year, and an ER trip by my husband, to get the medical establishment to look for it. And boy did they find it once they looked - heart, liver, gallbladder, entire GI tract....will post symptoms soon. Busy work day today. Mary

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