Acquired Von Willebrand syndrome

Posted by mtevcm @mtevcm, Feb 16, 2023

I was recently diagnosed with Acquired Von Willebrand syndrome. I went to the hematologist initially because I was seriously concerned about massive bruising I was getting. Now, she has done tons of bloodwork. I've been tested for blood cancers and autoimmune disorders, as well as CAT scanned to see if there were tumors in my chest or abdomen. Nothing. I have other symptoms too, including late onset seizures and unexplained all over body itching, as well as joint swelling. Please help. I am also looking to get a second opinion.

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Lori, Volunteer Mentor | @loribmt | Feb 17, 2023

Hello @mtevcm Acquired Von Willebrand Syndrome is relatively rare. It helps to know you’re not alone so I’m happy to welcome you to Mayo Connect where I was able to find two other members associated with this condition in our forum. @koryw208, who has AVWS and @susanellis, whose daughter has this syndrome. They may be able to share some insights with you.

This conversation ~High Platelets~ is where @koryw208 discusses her experience.
https://connect.mayoclinic.org/discussion/high-platelets/?pg=6#comment-792936
There are quite a few replies with @susanellis in this discussion regarding,
High platelet count: What does this mean?
https://connect.mayoclinic.org/comment/251998/
Since this is such a rare condition, I’d encourage you to get that second opinion at a larger teaching institution such as Mayo Clinic. Mayo has 3 campuses in the US, Rochester, Mn, Jacksonville, FL and Phoenix/Scottsdale AZ.

Click on this link to lead you to the Mayo Clinic main page. You’ll find numbers for the campus most convenient for you. An appointment request starts with a simple phone call.
http://mayocl.in/1mtmR63
Are you currently on any treatments?

mtevcm | @mtevcm | Feb 17, 2023

In reply to @loribmt "Hello @mtevcm Acquired Von Willebrand Syndrome is relatively rare. It helps to know you’re not alone..." + (show)

No treatments. I am interested in learning the underlying cause and to find out if I should be seriously concerned.

Lori, Volunteer Mentor | @loribmt | Feb 17, 2023

In reply to @mtevcm "No treatments. I am interested in learning the underlying cause and to find out if I..." + (show)

Anytime you have a blood condition it should be taken seriously. From everything I’m reading about AVWS it can be complicated to diagnose, as you’re already finding out.
Acquired Von Willebrand Syndrome is usually associated with an underlying disorder and it looks like your doctor has been trying to determine the cause.
I found a good article that was quite informational on AVWS. Hopefully it gives you some insight.
https://ashpublications.org/blood/article/117/25/6777/24352/How-I-treat-the-acquired-von-Willebrand-syndrome
I really think your idea of the second opinion is a very sound.
Again, as in my earlier post, I’d suggest getting a consult with Mayo Clinic (all the info is in the previous post) a teaching college or larger medical facility near you. It would be worth the further investigation.

marykatr | @marykatr | Nov 26 12:10am

My husband was diagnosed with Acquired von Willebrand Syndrome almost a year ago today. Six months later, he was diagnosed with AL (light chain lambda) Amyloidosis and that the AvWS is related to the loss of high-weight multimers which is a result of his AL Amyloidosis somehow (or something similar to this.) He is in month 5 of DaraCyborD chemotherapy regimen and just now his high-weight multimers are starting to increase which is indeed decreasing his bruising and bleeding. I had to push, push, push unbelievable hard for him to be tested for amyloidosis (we had ruled out lupus, multiple myeloma, all the other things that can cause one to 'acquire' the von willebrand syndrome.) I hope you find your answers - don't give up!

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