Von Willebrand disease, an inherited blood disorder that slows or prevents the blood’s ability to clot, is not cancer, but it is also not a routine blood disorder. Every person’s disease is different, with individually unique genes and molecules driving that disorder.

At the OSUCCC – James, our subspecialists are world-renowned experts who focus solely on blood disorders and who reach across medical disciplines (hematologists, pharmacists and more) to design the very best treatment plan and therapies to treat each patient’s disease.

And by offering access to the country’s most advanced clinical trials right here at the OSUCCC – James, patients know that additional options, when needed, are always available for their treatment and care.

What is von Willebrand Disease?

Von Willebrand disease, or VWD, is an inherited bleeding disorder that slows or prevents the blood’s ability to clot. This can cause abnormal, heavier bleeding after an injury.

Typically, the body’s blood clots normally after a cut or injury when the cells within the blood, called platelets, gather together to plug a hole in the blood vessel to stop the bleeding.

Patients with VWD, however, have low levels of a protein called von Willebrand factor that helps hold clots together when the body has normal levels of it. Some people with VWD may actually have normal levels of the protein, but it still fails to work properly to control blood clotting.

The von Willebrand factor also carries another clotting protein, called factor VIII, which is involved in blood clotting. Factor VIII typically is either absent or not working properly in patients with hemophilia.

VWD is the most frequently diagnosed bleeding disorder (it occurs in one of every 100-1,000 men and women), and it usually causes milder symptoms than hemophilia.

(Source: National Heart, Lung, and Blood Institute)

Kinds of von Willebrand Disease

There are three main classifications for von Willebrand Disease:

Type 1

Type 1 is the mildest and most diagnosed form of VWD (about three out of four people with VWD have Type 1). These patients have low levels of the von Willebrand factor and may also have low factor VIII levels.

Type 2

Type 2 is caused by different genetic changes, or mutations, from Type 1. This then determines the subtype of a patient’s VWD (such as subtype 2A, 2B, 2M or 2N). In Type 2 VWD, the von Willebrand factor is not working properly.

Type 3

Type 3 VWD is the rarest but most serious form of the disease. People who have Type 3 VDW have no von Willebrand factor and low levels of factor VIII.

(Source: National Heart, Lung, and Blood Institute)

von Willebrand Disease Symptoms

Von Willebrand disease symptoms vary depending on the type of the blood disorder you have: Type 1, Type 2 or Type 3. Symptoms can also depend on how serious the disorder is in certain patients. For example, many patients have such mild symptoms that they don't know they have VWD.

Type 1 or Type 2 VWD can include the following mild-to-moderate bleeding symptoms:

  • Frequent, large bruises from minor bumps or injuries
  • Frequent or hard-to-stop nosebleeds
  • Prolonged bleeding from the gums after a dental procedure
  • Heavy or prolonged menstrual bleeding in women
  • Blood in your stools from bleeding in your intestines or stomach
  • Blood in your urine from bleeding in your kidneys or bladder
  • Heavy bleeding after a cut or other accident
  • Heavy bleeding after surgery

Patients with Type 3 VWD may have all of the symptoms above, plus severe bleeding episodes for no particular reason. These bleeding episodes can be fatal if not treated right away. They may have bleeding into soft tissues or joints, causing severe pain and swelling.

Heavy menstrual bleeding often is the main symptom of VWD in women. Doctors call this menorrhagia, and these symptoms include:

  • Bleeding with clots larger than about 1 inch in diameter
  • Anemia (low red blood cell count) or low blood iron
  • The need to change pads or tampons more than every hour

Just because a woman has heavy menstrual bleeding, however, doesn't mean she has VWD.

(Source: National Heart, Lung, and Blood Institute)

Having these symptoms does not necessarily mean you have VWD. But if you have symptoms, you should tell your doctor, especially if symptoms are severe or have continued for longer than a few weeks.

If you’ve been diagnosed with von Willebrand disease, would like a second opinion or would like to speak with a blood disorder specialist, please call The James Line at 800-293-5066 or 614-293-5066 to make an appointment.

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