Von willebrand : I had my routine check up today... - MPN Voice

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Von willebrand

Jbone636 profile image
7 Replies

I had my routine check up today. I was diagnosed with e.t jak 2 positive 2 years ago. My platelet count has went over a million. The clinic called back after my visit and had me return to do a von willebrand blood test. The lab told me it's a protien. Does anyone know what they're testing for?

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Jbone636
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7 Replies
digijools profile image
digijools

Hi there! I recently had this test too. They are testing for a bleeding disorder related to taking aspirin.

clubdino profile image
clubdino

When your platelets go over a million you can get acquired von willebrands. It makes you more likely to bleed. It has nothing to do with aspirin. But they would require you to stop aspirin if you have von willebrands.

fee13 profile image
fee13 in reply to clubdino

Clubdino is correct 😀

socrates_8 profile image
socrates_8

Hey Jbone... :-0)

I found this information which might be useul to you...?

What is being tested?

Von Willebrand factor (vWF or VWF) is a protein that is one of several components of the coagulation system that work together, and in sequence, to stop bleeding within the body. VWF testing measures the amount of the protein present in blood and determines how well the protein functions.

Normally, when a blood vessel is damaged and bleeding begins, VWF forms an adhesive bridge between activated cell fragments called platelets and the injury site. This is followed by the clumping (aggregation) of platelets at the site and a series of actions referred to as activation of the coagulation cascade, resulting in the formation of a stable blood clot.

VWF further affects clotting by influencing the availability of coagulation factor VIII. VWF carries factor VIII in the blood, increases its half-life, and releases it as necessary. If the amount of functional VWF is insufficient, then platelet adherence and aggregation are affected, levels of factor VIII could be decreased, blood clot formation takes longer, and therefore bleeding is prolonged. This deficiency causes a condition referred to as von Willebrand disease (VWD).

VWD is the most common inherited bleeding disorder. It is a group of conditions associated with prolonged bleeding due to deficient and/or defective VWF. VWD is separated into different types and sub-types, including:

Type 1 – with this type of VWD, there is a decrease in the amount of VWF produced, but the VWF functions normally. Levels of factor VIII are also typically low but may be normal. This is the most common type of VWD, accounting for about 75% of cases. It tends to cause bruising and mild to moderate bleeding, such as persistent nosebleeds, heavy menstrual periods, and prolonged bleeding following childbirth, trauma, dental procedures, and surgeries. Symptoms and the severity of bleeding will vary from person to person and from episode to episode.

Type 2 – this type is associated with a normal amount of VWF, but the VWF does not function normally. Bleeding may be more severe with this with this type. Type 2 is further divided into Types 2A, 2B, 2M, and 2N.

Type 3 – this rare type is associated with very little VWF production, very low factor VIII levels, and moderate to severe symptoms. It is often detected in infancy because of early bleeding episodes.

Rarely, VWD may be due to an acquired VWF deficiency, where there is no family or personal bleeding history up to the point when signs and symptoms develop.

Von Willebrand factor testing includes VWF antigen, which measures the amount of VWF, and VWF activity (also known as Ristocetin Cofactor), which evaluates the function of VWF. Some laboratories may offer a panel that includes both of these tests along with a factor VIII activity test.

Best wishes

Steven

(Sydney)

SilverET profile image
SilverET in reply to socrates_8

Steven's info above is correct but you can also get a situation with ET where high platelet numbers are being produced and even if the spleen is removing some of them so numbers circulating may not be super high (ie blood tests not drastically high) the VWF produced gets used up so you end up being deficient even though you don't really have VWD. If the platelet numbers can be decreased the VWF production can catch up again as with Ebot below.

Cheers,

Silver ET

Ebot profile image
Ebot

I too was diagnosed with Von Willebrand. As you can see it’s a clotting disease. It has implications, for example, if you need surgery. However, I was not taken off aspirin and the good news is, since I’ve been on Hydroxy and my platelet count has tumbled I apparently no longer have VW. It’s one of those things that goes with the MPN territory. But it can be managed, and clearly, it can also disappear! All the best.

Uzza profile image
Uzza

Hello Jbone636,

I imagine Von Willebrand disease (VWD), a genetic disorder caused by missing or defective von Willebrand factor (VWF), a clotting protein. VWF binds factor VIII, a key clotting protein, and platelets in blood vessel walls, which help form a platelet plug during the clotting process.

Cheers,

Uzza

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