VWD Screening

[Mich10]

Hello, hope everyone is well.

Can anyone enlighten me as to what VWD screening is please?

Many thanks

Mich

[Tico]

Hi Mich, VWD, stands for von willebrand disease, a clotting disorder that can cause prolonged or severe bleeding. Didn't you haemo explain why they were testing you? Alway's remember to ask why your being sent for any kind of tests and why, so you are kept in the loop. Atb, tina.🤗

[Mich10 in reply to Tico]

Hello Tina

Thank you for your reply.

I had a call from the oncology nurse asking to go for this test ASAP which is what I did, so didn’t get a chance to discuss it with the haemo. The nurse didn’t know what the test was for, nor did the nurse taking my blood.

Mich

[Rachelthepotter]

Hi Mich

Have a look at this Mayo Clinic link: mayoclinic.org/diseases-con....

Von Willebrand Disease is a condition where your blood doesn’t clot properly. I think that acquired VWD ( as opposed to the hereditary kind) can be part of platelet malfunction in MPNs. Not happened to me yet, so no direct experience.

Regards

Rachel

[Mich10 in reply to Rachelthepotter]

Thank you Rachel 👍

[Lab-Rat]

With high platelets you may have low Von Willebrand Factor and so will then not be able to take aspirin due to bleeding risk. Your doc is doing this test to see if you can safely go on aspirin, or not. My recent Von Willebrand screening showed I still have low VWF even though my platelets are now <1000 and thus aspirin is contraindicated.

[Mich10 in reply to Lab-Rat]

Thank you for your reply.

I’m already on 75mg aspirin and waiting results. Your reply is helpful thanks again

Mich

[hunter5582]

The testing for Acquired von Willebrand Disease tarts with a standard vWB Panel. usually vWF:antigen, vWF ristocetin, Factor VII:C - evaluation of prothrombin times. These findings are not definitive. Additional testing (vWF:multimers, and vWB:propetide) may also be needed. At times an antibody panel (e.g. ELISA) may be needed. I am currently being assessed for just this thing. Waiting on results. Hematologists do not necessarily know about how to do this complete assessment. I had to provide my doc (who I really like) with this resource hematologyandoncology.net/f... . Best to be educated on this topic. Diagnosis of Acquired von Willebrand is a bit complex and more difficult than the congenital type. Hope you get it sorted out soon.

[Mich10 in reply to hunter5582]

Thank you hunter

My goodness it sounds very complicated! I am also waiting on results. I will look at the link.

Many thanks and fingers crossed for a good result.

Mich

[hunter5582 in reply to Mich10]

It is really complicated. The tricky part is most factors can look OK, but if just one factor is off - it may be a problem. Just to keep it more interesting, if you are blood type O, then some of your numbers may be 20-30% lower anyway. Definitely read up and make sure you understand all the terms. also know that we MAY hover on the edge of vWB Disease without quite crossing into the diagnosable range. Hope you get answers soon.

[Mich10 in reply to hunter5582]

Thank you! 😊

[socrates_8 in reply to hunter5582]

Hey Hunter...

Just found this Post.

I have just undergone the standard test array myself, undertaken on a hunch after discussions with another MPNer. Hence, my specialists is unaware at the present, as I ordered them via my GP etc...

I shall pass on the results to my specialist shortly. The result seems most likely to suggest that I am possibly Type1, without venturing down the path of further testing at this juncture...

Bon chance with your own results...

Steve

[Meatloaf9]

Wondering if anyone with acquired VWD has actually had a problem with bleeding. My tests indicate that I could have VWD but have never had any trouble with bleeding and still take two 81mg aspirins per day. I weigh 260lbs.

[Mich10 in reply to Meatloaf9]

Hiya

I had to be tested because of random bruising, no bleeding.

Are they treating you for VWD?

I hope you are ok

Mich

[Meatloaf9]

Not currently getting any treatment. Go back to specialist in early June. Good luck to you.