Von Willebrand Disease – Diagnosis and Treatment

ByJanis Updated

Diagnosis

Doctors begin by checking a person’s medical history and asking about symptoms like frequent nosebleeds, easy bruising, or unusual bleeding after minor injuries or surgeries.

They may also look for signs such as unexplained bruises or heavy menstrual bleeding. Since von Willebrand disease (VWD) is often inherited, questions about family members with similar bleeding problems are important.

A physical exam follows, focusing on any current or past bleeding issues. If VWD seems likely, doctors usually order a series of laboratory tests:

Test Type Purpose
Von Willebrand factor antigen Measures the amount of von Willebrand factor (VWF) in the blood.
Von Willebrand factor activity Checks how well VWF helps blood clot.
Factor VIII clotting activity Evaluates if there are low levels of factor VIII.
VWF multimer analysis Reviews the structure of VWF proteins to help classify the type.

Doctors may order other tests to check platelet counts, prothrombin time, bleeding time, and fibrinogen levels to rule out other causes of bleeding or clotting problems.

Diagnosing mild cases can be more challenging since symptoms like bruises or menorrhagia are common in the general population. Stress, illness, pregnancy, or certain medications can cause results to fluctuate, so doctors may repeat testing for accuracy.

If VWD is confirmed, doctors might recommend family testing to identify inherited forms of the disorder and provide better care for relatives at risk.

Treatment

Doctors focus treatment for von Willebrand disease on increasing von Willebrand factor (VWF), supporting blood clotting, and reducing bleeding.

The approach depends on the severity, the specific type, and how the patient has responded to past treatments. In some cases, doctors use certain therapies only during times like injury or surgery.

Common options:

  • Desmopressin: This medicine helps the body release more of its own von Willebrand factor and factor VIII. Doctors can give it by injection or as a nasal spray. It is often the first treatment, especially before surgical or dental procedures. Not everyone responds the same, so patients may do a trial first.
  • Clotting Factor Replacement: Doctors give factor concentrates containing both von Willebrand factor and factor VIII through an IV if desmopressin is not enough or cannot be used. Recombinant (genetically engineered) versions of VWF reduce the risk of transmitting infections.
Treatment Type Key Medication/Option How It Works
Desmopressin Injection or nasal spray Stimulates the body to release stored VWF and factor VIII.
Factor Replacement Plasma-derived or recombinant factor concentrates Provides missing VWF/factor VIII directly.
Antifibrinolytics Aminocaproic acid, tranexamic acid Slow down clot breakdown to reduce bleeding.
Hormonal Therapy Birth control pills Raise VWF and factor VIII, control menstrual bleeding.
Local Treatments Fibrin glue, nosebleed products Stop bleeding at the site of injury.
  • Antifibrinolytic Medicines: Drugs such as aminocaproic acid and tranexamic acid help by keeping blood clots from breaking down too fast. Doctors often use these before and after dental work or surgery.
  • Hormones/Birth Control Pills: For women with heavy periods, doctors may recommend birth control pills to raise levels of VWF and factor VIII and control menstrual bleeding.
  • Topical Treatments: Fibrin glue and similar products are put directly on cuts to help stop bleeding. For minor nosebleeds, over-the-counter solutions may be used.

Most people with mild von Willebrand disease may only need treatment during specific situations, such as dental work, operations, or after injuries.

Doctors adjust the plan based on each patient’s needs and reactions to medicines. Regular follow-up helps manage and adjust treatment as needed.

Self-Care

Managing von Willebrand disease in daily life includes practical choices. People should avoid medications like aspirin and other NSAIDs (such as ibuprofen or naproxen sodium), as these can increase bleeding.

Acetaminophen is often a safer option for pain relief. Talk with a doctor before starting any new medicine.

Tell all health care providers, including dentists, about the diagnosis, especially before any surgical procedures, new prescriptions, or if planning events like childbirth. This helps prevent problems with heavy bleeding.

Wear a medical alert bracelet or carry a medical information card so emergency workers know about the condition. This is useful if someone cannot speak for themselves.

People with this condition are more likely to have easy bruising and heavy periods for those who menstruate.

To stay safe, choose activities that carry less risk of bruises or injuries. For example, swimming or walking can be better options than contact sports. Regular exercise remains important for overall health.

Getting Ready for Your Visit

Steps You Can Take Before the Appointment

  • Ask About Restrictions: When scheduling the visit, check if any special instructions need to be followed, such as fasting or dietary limits before blood tests.

  • Write Down Symptoms: Keep a record of any bleeding, such as nosebleeds, unusual bruising, or heavy periods. Make notes about how long symptoms last and how serious they are.

  • List Personal and Medical History: Prepare information about health changes, emotional stress, or recent events. Include any history of easy bruising or nosebleeds in childhood.

  • Family Background: Find out if any close family members have had bleeding problems, especially if a sibling, parent, or other relative has experienced similar symptoms.

  • Medication and Supplements: Make a list of all medicines, vitamins, or supplements, including how much and how often they are taken.

  • Prepare Questions: Consider writing down questions such as:
    Common Questions to Ask the Doctor
    • What causes my symptoms?
    • What treatment do you suggest?
    • How will treatment be checked?
    • Will I need special care for surgery or dental work?
    • Should I limit any physical activities?
    • Does this condition increase my risk during pregnancy or childbirth?
    • What are the side effects of the medicines?
  • Bring Someone With You: If possible, ask a family member or friend to attend the appointment for support and to help remember the information provided.

Questions Your Doctor Might Ask

  • The doctor will often ask detailed questions about how long any bleeding has lasted from small wounds or nosebleeds, and if medical attention was needed.

  • They may want to know about unusual bruising, lumps under bruises, or if you have had blood in stool that cannot be explained by other health issues.

  • If menstruation applies, questions may include how many days a period usually lasts and how often sanitary products need to be changed.

  • Past experiences with bleeding after surgery, dental procedures, childbirth, or injury will be discussed.

  • The doctor could also ask about any history of anemia or if blood transfusions have been needed.

  • Sometimes, a table of topics may help organize these details:

Topic Key Medication/Option
Bleeding Duration Did bleeding last more than 15 minutes?
Nosebleeds Did any last more than 10 minutes?
Surgery or Dental Work Any extra bleeding during procedures.
Family History Anyone else in the family with bleeding?
Anemia or Transfusions Ever needed a transfusion?

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Health Writer

Janis's areas of expertise include nutrition, exercise, stress management, and mental health. She is passionate about educating and empowering people to take control of their health and make positive changes that can last a lifetime. Janis believes that small, sustainable changes are the key to long-term success, and she works with her clients to develop personalized plans that fit their individual needs and lifestyles.