Common Questions

Common Questions About VWD

What is a bleeding disorder?
What is von Willebrand disease (VWD)?
What is the incidence of VWD?
How do you get VWD?
What causes VWD?
What are the symptoms of VWD?
How do I know if I have VWD?
How is VWD treated?
What is an HTC?
Are there support groups available for people with VWD?
See what real people are asking

What is a bleeding disorder?

A bleeding disorder is a broad term for medical conditions that happen when blood cannot clot properly, leading to such symptoms as prolonged bleeding and bruising easily. Bleeding disorders are also referred to as coagulopathy, abnormal bleeding and clotting disorders.
Source: http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=26&contentid=5&rptname=bleeding

What is von Willebrand disease (VWD)?

von Willebrand disease (VWD) is the most common — but most underdiagnosed — bleeding disorder, affecting about 1% of all people. People with VWD take longer to stop bleeding than is normal. This is because people with the condition have insufficient or low levels of von Willebrand factor, a blood protein that is necessary for normal blood clotting. In VWD, bleeding can be mild or serious and can occur after injury or without any cause at all.

What is the incidence of VWD?

VWD affects about 1% of all people and is equally likely to affect males and females.

How do you get VWD?

VWD is passed along from parent to child in a pattern called autosomal dominant inheritance. This means that if one parent has VWD, the child has a 50% chance of inheriting a mild form of the disease. If both parents have VWD, the child could inherit either a mild (50% chance) or severe (25% chance) form of the disease.

What causes VWD?

von Willebrand disease (VWD) is caused by a defect or deficiency of von Willebrand factor (VWF).

What are the symptoms of VWD?


The most common VWD symptoms include:

  • Bruising easily
  • Frequent nosebleeds, bleeding gums
  • Heavy menstrual periods
  • Prolonged bleeding after cuts or surgery (including dental work)
  • Bleeding in the stomach, intestines, muscles, or joints in severe cases

The symptoms of VWD depend on the type and severity of the condition.

How do I know if I have VWD?

The only way to know for sure that you have VWD is to talk to your doctor and get a diagnosis. An early, accurate diagnosis is important since treatment depends on the type of VWD you have. To help make the diagnosis, the doctor will ask you about your family medical history and your own medical history and perform a physical examination. Your doctor will also run blood tests to determine the levels of von Willebrand factor in your blood.

How is VWD treated?

Treatment for VWD is based on the type of VWD and the severity of symptoms. The aim of therapy is to correct the clotting problem. This is usually accomplished by raising the levels of von Willebrand factor (VWF) and another protein called factor VIII in the bloodstream. Most cases of VWD are mild, and you may need treatment only if you have surgery, tooth extraction or an accident.

What is an HTC?

An HTC, or hemophilia treatment center, is a clinic where medical experts and other specialists work together to provide specialized care, education and support to people with bleeding disorders, including VWD. The healthcare teams at HTCs include pediatricians, adult and pediatric hematologists (doctors who specialize in bleeding disorders), nurses, social workers, physical therapists and dentists.

There are more than 100 federally funded HTCs throughout the United States. Locate an HTC in your area.
Source: http://www.nhlbi.nih.gov/health/dci/Diseases/hemophilia/hemophilia_all.html
100 Q&A About VWD, page 23

Are there support groups available for people with VWD?

Yes, there are a number of support groups available for people with bleeding disorders and their loved ones. Some of the National Hemophilia Foundation’s Chapter Centers offer support groups. You may also find a support group at a hemophilia treatment center (HTC) near you.

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See what real people are asking

The questions below were submitted by real people who have been affected by VWD. Each question was answered by experts in the field of bleeding disorders.

Q: I just found out today that I might have VWD. Can I die from it, and if my kids have it, could it harm them seriously?

A: Patients with von Willebrand disease are at increased risk of bleeding under certain circumstances. With proper diagnosis and therapy it is unlikely that you or your children will have serious harm as a result of this disorder. Please review your concerns with your doctor.

Q: What are the chances that my infant daughter has VWD if her father does not have the disease but the child's aunt and grandmother have the disease?

A: The von Willebrand disorder can be inherited but can be clinically silent in a person. Therefore, it is difficult to know if your child is at risk of having von Willebrand disease. If she manifests bleeding symptoms, then it would be reasonable to have her tested. Certainly, if a major surgery or procedure is planned, you need to make sure her doctor is aware of this information about her family history.

Q: I was diagnosed with VWD as a young adult. I developed arthritis over the years and now, at 57, have a need for surgery on both ankles. Is joint degeneration an outcome of VWD?

A: Some limitation in the range of movement of joints is now being reported in persons with von Willebrand disease. However, it would be difficult to pinpoint the bleeding disorder as the cause of your ankle problems. If you have severe von Willebrand disease then the bleeding disorder would more likely be the cause. Be sure and let your hematologist know you are planning surgery so that you can be evaluated and treated appropriately to prevent bleeding complications.

Q: What specific lab tests are ordered to help diagnose von Willebrand disease?

A: Von Willebrand disease (VWD) is a genetic disorder that is associated with a low von Willebrand protein level. Von Willebrand protein (or factor, VWF) is the glue that holds together the proteins and cells (platelets) in your blood that form a blood clot. People with VWD have a mutation in their VWF gene, their DNA. Other people have been found to have a low VWF level without having a mutation in their VWF gene. People with blood type O, for instance, may have a low VWF level but don't carry an inherited genetic mutation.

For people with VWD, they may make too little VWF protein (a quantitative defect). Others make a protein that doesn't work normally (qualitative defect).

The blood tests done to diagnose VWD are generally:

  • The VWF Antigen Assay, which tells you how much protein is circulating in your blood.
  • The Ristocetin Cofactor Assay tells you how well the VWF protein works.
  • A Factor VIII level is also done. VWF binds to factor VIII, a clotting protein that's lacking in people with one type of hemophilia. Factor VIII levels may be low in people with VWD.
  • Thereafter, the Hematologist may do a series of additional tests to better subtype the VWD diagnosis.

Q: Is the expected lifespan shorter for people with VWD?

A: In general, people with von Willebrand disease do not have a shortened lifespan.

Q: Every time I have intercourse with my boyfriend, I bleed as if I am having my period. I am very concerned. Can you please help me find out the problem?

A: Vaginal bleeding with sexual intercourse is not normal, even in women with underlying bleeding disorders. You should consult your physician for a full gynecologic examination.

Q: I have just been diagnosed with VWD at the age of 56 and wonder if this disease can be treated naturally. I am averse to taking medications.

A: First you need to find out if your doctor thinks you have the inherited form of von Willebrand disease. If so, was this diagnosis made because you have a history of excessive bleeding and now require intervention for a surgical procedure? If you have the acquired form of von Willebrand disease it is, in some ways, a more serious condition. The acquired form of von Willebrand disease develops in association with another illness or, sometimes, without apparent reason. The acquired form requires the treatment used to prevent bleeding as well as treatment to eradicate the underlying disorder. In either situation, it is likely that you will need medical therapy.

Q: I have VWD type 1 and expect to be scheduled for a knee replacement in two months. What precautions should I expect my surgeon recommend prior to the surgery?

A: Your surgeon should discuss with your hematologist how best to take care of you. Your hematologist will need to give treatment guidelines designed for you to the surgeon to prevent bleeding as well as thrombosis (blood clotting).

Q: How often (monthly, annually, etc.) does someone with von Willebrand disease have an incident of open bleeding (cut, nosebleed, et cetera) that requires treatment? What is that treatment likely to consist of? Also, should someone with VWD take any prophylactic measure(s) to safeguard against such an event?

A: The frequency and severity of bleeding that occurs with von Willebrand disease varies with the patient's subtype and factor levels.

Q: In children with VWD, what should you do for childhood injuries, such as bumps on the head or shin bruises?

A: Your question about von Willebrand disease in a child is an important one. We have guidelines for children with severe hemophilia when they are injured, particularly in the head. As a milder bleeding disorder, von Willebrand disease is quite prevalent yet often unrecognized. The strict precautions taken for hemophilia patients may not be appropriate for children with von Willebrand disease. However, once von Willebrand disease is diagnosed, you need to discuss your concerns with your child’s hematologist who will know what your child’s type is. Then, together, you can arrive at guidelines that will best suit his or her condition.

Q: My son has VWD Type 2 and is having a root canal. Is it safe in the dentist office for him?

A: A person with von Willebrand disease should advise his dentist of the condition and ask that he speak with his hematologist before any procedure. The treatment regimen would then be tailored to both the procedure and your son's particular subtype of von Willebrand disease. It would also take into account your son's response to the varied forms of treatment.

Q: Are there summer camps for people with VWD? I know there are some for hemophilia, but are there any for VWD specifically?

A: Good question!! There are summer camps that allow children with bleeding disorders and their families to network and deal with special problems — such as home infusion, etc. You may wish to contact the National Hemophilia Foundation and inquire about camps for people with VWD. They're a wonderful experience.

Q: I am a school nurse and a child with von Willebrand disease just entered one of our schools. What modifications, accommodations should the school make to assist this child? Do you have any kind of a school based care plan?

A: The need for precautions for this child are dictated by the severity of the child's bleeding tendency. A mechanism should be established by which the child could receive therapy, such as DDAVP, rapidly after a major injury. I suggest you plan a meeting with the child's parents and pediatrician. Our local pediatric hematologist and nurse often make site visits to schools to review the disease, bleeding tendencies and provisions for emergencies. A school based care plan should be determined by the child's physicians and family.

Q: Can a person who has been diagnosed with a mild form of von Willebrand disease donate blood?

A: No. The presence of a bleeding disorder, no matter how mild, is a general contraindication to donation. It is also a safety issue for you.

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