von Willebrand Disease-Ugly and Real

August 8, 2018

 

von Willebrand Disease is a bleeding disorder that affects about 1% of the population in the United States. It’s caused by a lack of vWF or the von Willebrand Factor. 

What is that you ask? 

Its a type of protein that helps your blood to clot, however von Willebrand is different from hemophilia, another type of bleeding disorder. They are both inherited gene mutations. If you have von Willebrand one or both of your parents carry the gene that has passed on to you; genetic testing can tell you if you have it. Both parents must have the gene for a person to have Type 3 von Willebrand. vWF or von Willebrand Factor is a protein that helps platelets clot.

If you have low levels of vWF, your platelets won’t be able to clot correctly. This causes bleeding to be excessive.

 

There are three (3) types of von Willebrand Disease:

Type 1 is the most common. This type you just have lower levels than normal of vWF but can still live a normal life and function normally.

Type 2 has lower levels of vWF than normal, however yours does not work correctly due to structural and functional defects. They have divided type 2 into two (2) sub-types:

2 A

2 B

2 M

2 N

Type 3 of von Willebrand disease is the most dangerous of all. With this type your body doesn't produce any vWF and as a result, platelets can't clot. This makes severe bleeding a high risk that's very hard to stop.

 

If replacement therapy is needed your doctor could recommend or prescribe Humate-P or Alphanate Solvent Detergent/Heat Treated (SD/HT). These are two types of biologic's , or genetically engineered proteins. For non replacement therapy they may recommend or prescribe desmopressin (DDAVP), which is a drug recommended for types 1 and 2A. DDAVP stimulates the release of vWF from your body’s cells.

I have type 2B von Willebrand Disease which apparently is an anomaly that results in spontaneous binding of high molecular weight vWF multimers to platelets causing the express clearance of both the platelets; increasing risk of thrombocytopenia; and vWF 

high molecular weight multimers from the plasma.

I just say Im a bleeder.

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