von Willebrand Disease

Questions from people with VWD

The following questions were submitted by people who have been affected by VWD. Each answer has been provided by an expert in bleeding disorders.

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

Patients with VWD are at increased risk of bleeding under certain circumstances. With proper diagnosis and therapy, it is unlikely that you or your children will experience serious harm from VWD. Make sure to review all of your concerns with your healthcare professional.

What are the chances that my infant daughter has VWD if her father does not have the disease, but her aunt and grandmother have it?

VWD can be inherited but be clinically “silent” in a person. This makes it difficult to know whether your child is at risk for inheriting VWD. If she has bleeding symptoms, you should have her tested. If a major surgery or procedure is planned, you should make sure her healthcare professional is aware of her family history.

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

People with VWD can have a limited range of movement in their joints. However, it would be difficult to determine whether your VWD caused the problems in your ankles. Let your hematologist know you are planning surgery so that you can be evaluated and treated appropriately to prevent bleeding complications.

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

Some people with VWD make too little VWF protein, while others make a protein that doesn’t work as it should. Blood tests are used to diagnose VWD. These tests include2:

  • The VWF antigen assay, which tells how much protein is circulating in your blood
  • The ristocetin cofactor assay, which tells how well the VWF protein works
  • The factor VIII clotting activity, which tells if your factor VIII is working properly
  • The VWD factor multimers test, which shows the structure of your VWD factor, which determines the type of VWD
  • The platelet function test, which measures how well your platelets are working

The hematologist may do a series of additional tests to subtype the VWD diagnosis.

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

Vaginal bleeding with sexual intercourse is not normal, even in women with underlying bleeding disorders. Consult your physician for a full gynecologic examination.

I have type 1 VWD and will need a knee replacement in 2 months. What precautions will my surgeon likely recommend prior to the surgery?

Your surgeon and your hematologist should discuss how best to take care of you. Your hematologist will need to provide your surgeon with treatment guidelines that are designed to prevent bleeding as well as thrombosis (blood clotting).

How often does someone with VWD have an incident involving open bleeding (cut, nosebleed) that requires treatment?

The frequency and severity of bleeding that occurs with VWD can vary based on a person’s subtype and factor levels.

My son has type 2 VWD and is having a root canal. Is this procedure safe for him?

Advise his dentist of the condition and ask that he or she speak to your son’s hematologist before any procedure. The treatment regimen should then be tailored to both the procedure and your son’s particular subtype of VWD. Your hematologist and dentist should also take into account your son’s response to various forms of treatment.

There are more than 100 federally funded HTCs throughout the United States. Locate an HTC in your area

Are there summer camps for children with VWD?

Yes, there are summer camps that allow children with bleeding disorders and their families to network and deal with special problems, such as home infusion. You can contact the National Hemophilia Foundation to find out more. These camps can be a wonderful family experience.

I am a school nurse, and a child with VWD just enrolled in my school. What modifications or accommodations can we make to assist this child? Can you recommend a school-based care plan?

Precautions for this child will be determined by the severity of his or her bleeding tendency. A protocol should be established in conjunction with the child’s physician and family so the child can receive therapy rapidly after any major injury. I suggest that you meet with the child’s parents and physician.

Can I give blood if I have been diagnosed with a mild form of VWD?

No. You cannot give blood if you have a bleeding disorder.