I have Hereditary Von Willebrand and now have Acquired Von Willebrand

Posted by hemaperson @hemaperson, May 6 8:36pm

I was diagnosed years ago with Hereditary Von Willebrand Disorder. I now I have developed Acquired Von Willebrand. Having both is apparently very rare. Does any one else know of any cases. I would be interested in hearing.

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swalex | @swalex | May 7 12:11am

Hello @hemaperson,

I have genetically confirmed von Willebrand disease (VWD) and Factor V Leiden.
If you like you can find some background information and explanations in the following links:

Excessive Bleeding: VWD Type II, Factor V Deficiency, APS, and Vitamin K
https://swaresearch.blogspot.com/2024/06/excessive-bleeding-vwd-type-ii-factor-v.html
Overview of Von Willebrand Factor (VWF) and Related Conditions
https://swaresearch.blogspot.com/2024/06/overview-of-von-willebrand-factor-vwf.html
Mechanisms by Which Von Willebrand Factor (VWF) Can Contribute to Thrombosis
https://swaresearch.blogspot.com/2024/06/mechanisms-by-which-von-willebrand.html

hemaperson | @hemaperson | May 7 7:15am

In reply to @swalex "Hello @hemaperson, I have genetically confirmed von Willebrand disease (VWD) and Factor V Leiden. If you..." + (show)

@swalex Thank you for your message. AvWs Acquired Von Willebrand is the same family but different than Factor V Leiden. AvWs is developed from Cancer or Autoimmune Disease. Mine is from MGUS. I have had severe regular Von Willebrand all my life but the new AvWs appeared 3 years ago.

swalex | @swalex | May 7 9:45am

In reply to @hemaperson "@swalex Thank you for your message. AvWs Acquired Von Willebrand is the same family but different..." + (show)

@hemaperson, I appreciate your answer.
It also brought up a longstanding question I’ve had about whether medication can contribute to acquired von Willebrand syndrome (AvWS), since I have VWD type 2.

After brain surgery in 2009, I noticed excessive bleeding at the scalp. Then, following lumbar surgery in 2016 complicated by sepsis, I was treated for weeks with vancomycin and ciprofloxacin, and my back became severely bruised.

Since then, I’ve developed lupus and can no longer take NSAIDs, aspirin, or fluoroquinolones.

During COVID, I was diagnosed with petechiae, but the most severe bruising began after the BioNTech-mRNA vaccination.

Do you experience medication sensitivity as well?

hemaperson | @hemaperson | May 7 10:27am

In reply to @swalex "@hemaperson, I appreciate your answer. It also brought up a longstanding question I’ve had about whether..." + (show)

@swalex oh my goodness you have had a trying time.
I hope things get better for you. I have had no complications with meds.
My bruising has always been extensive. However the Aquired VW does contribute to joint bleeds especially my ankles. For my bleeds I have Humante P

Stay well

swalex | @swalex | May 7 11:27am

In reply to @hemaperson "@swalex oh my goodness you have had a trying time. I hope things get better for..." + (show)

@hemaperson
May I ask whether you have concomitantly low Factor VIII (FVIII) levels and are being monitored frequently?
Also, do you experience pain while walking related to ankle joint bleeds?

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