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Hematology

How Is Von Willebrand Disease Inherited?

At a Glance

You will not definitely pass Von Willebrand disease to your children. The chances depend on your specific subtype and your partner's genetics, ranging from 0% to 50%. A genetic counselor can confirm your exact subtype to help you safely plan your family and manage pregnancy risks.

If you have Von Willebrand disease (VWD), you will not definitely pass the condition to your children. Whether your children inherit the disease—and how severe it might be—depends entirely on the specific type of VWD you have and the genetics of your partner [1]. Von Willebrand disease is an inherited genetic condition passed down through families, but it follows two completely different inheritance patterns known as autosomal dominant and autosomal recessive [1].

Because VWD has several different subtypes, the chances of passing it on typically range from 0% (if you have a recessive type and your partner is not a carrier) to 50%, assuming your partner does not also have VWD or carry the gene [2]. If a child does inherit VWD, it is important to remember that highly effective treatments are available to manage symptoms, allowing them to live a normal, active life.

Understanding your specific type is the first step in family planning.

Autosomal Dominant VWD (Types 1, 2A, 2B, 2M)

Most cases of Von Willebrand disease—including Type 1 and several subtypes of Type 2 (2A, 2B, and 2M)—follow an autosomal dominant pattern [1].

Autosomal dominant means that a child only needs to inherit one copy of the mutated gene from one parent to inherit the condition. If you have one of these dominant types, you have one mutated VWD gene and one normal VWD gene.

Assuming your partner does not have VWD, your chances of passing it on are:

  • A 50% chance that each child will inherit the gene [2].
  • A 50% chance that each child will inherit your normal gene and will not have the condition [2].

It is important to know that even if your child inherits the gene, they might never experience noticeable bleeding symptoms. In genetics, this is called “incomplete penetrance” or variable expression. Type 1, for example, often has very mild symptoms that vary widely even within the same family [3][4].

Autosomal Recessive VWD (Types 2N and 3)

Type 3 and Type 2N of Von Willebrand disease follow an autosomal recessive pattern [1]. Type 3 is the most severe form of VWD, causing very low or non-existent levels of Von Willebrand factor [3]. Type 2N often causes a drop in factor VIII (another blood-clotting protein), mimicking a different bleeding disorder called Hemophilia A. This happens because Von Willebrand factor normally acts as a carrier protein that protects factor VIII in the bloodstream [5].

Autosomal recessive means that a child must inherit two copies of the mutated gene—one from both the mother and the father—to develop the clinical disease. A person with just one mutated gene is called a carrier. Carriers do not have clinical VWD and typically do not require treatment; while they might bruise slightly easier than average, they are generally considered healthy and unaffected, but they can pass the gene to their children.

If you have an autosomal recessive type (meaning you have two copies of the mutated gene):

  • If your partner is NOT a carrier: All of your children will inherit one mutated gene from you. They will be carriers, but they will not have the clinical disease themselves.
  • If your partner IS a carrier: There is a 50% chance your child will have the active disease, and a 50% chance they will be a carrier [2].

If you and your partner are both carriers of a recessive VWD gene (but neither of you has the active disease):

  • 25% chance of having a child with the disease [2].
  • 50% chance of having a child who is a carrier (like you) [2].
  • 25% chance of having a child who is neither a carrier nor affected [2].

The Role of Genetic Counseling

Because the subtypes of VWD can be complex, and standard laboratory blood tests do not always perfectly predict bleeding risks, genetic counseling is highly recommended for anyone with VWD who is planning to have children [6][4]. You can start this process by asking your hematologist or obstetrician/gynecologist (OBGYN) for a referral to a genetic counselor.

A genetic counselor can:

  • Confirm your exact subtype: Molecular genetic testing is increasingly used to pinpoint the exact mutation causing your VWD, distinguishing between subtypes (like 2B and 2N) that require different management strategies [7].
  • Test your partner: This is especially important if you have an autosomal recessive type, to determine if your partner is a carrier [8].
  • Discuss pregnancy risks: Genetic counselors and specialized hematologists will help you prepare for pregnancy and childbirth. Managing VWD during pregnancy requires specific care to lower the risk of heavy bleeding after delivery (postpartum hemorrhage) [9][10]. Please do not let this risk frighten you: doctors have highly effective treatment protocols, factor concentrates, and medications to keep you and your baby safe during and after delivery.

Common questions in this guide

Can You Develop Von Willebrand Disease Later in Life?Can You Get an Epidural with Von Willebrand Disease?Can You Have Iron Deficiency Without Anemia in VWD?Can You Play Sports with Von Willebrand Disease?Does Stress Affect Von Willebrand Disease Test Results?How Do Antifibrinolytics Work for VWD Bleeding?How Does Type O Blood Affect Von Willebrand Disease?Dental Work with Von Willebrand Disease: How to PrepareIs an IUD Safe for Women with Von Willebrand Disease?What Causes Delayed Postpartum Hemorrhage in VWD?What is a DDAVP Challenge Test for Von Willebrand Disease?What Is a Heavy Period with Von Willebrand Disease?Low VWF vs. Type 1 VWD: What is the Difference?Type 2N VWD vs. Hemophilia A: What's the Difference?Does Von Willebrand Disease Affect Life Expectancy?What Pain Meds Are Safe for Von Willebrand Disease?What's in a VWD Emergency Travel Letter?When Are Nosebleeds a Sign of Von Willebrand Disease?Why Must I Restrict Fluids After DDAVP?
Will I definitely pass Von Willebrand disease to my children?
No, you will not definitely pass it on. The chances depend on your specific type of Von Willebrand disease and your partner's genetics. For most types, there is a 50% chance of passing the gene to each child, while other types may have a much lower risk.
What does autosomal dominant Von Willebrand disease mean?
Autosomal dominant means a child only needs to inherit one copy of the mutated gene from one parent to have the condition. This pattern applies to Type 1 and several subtypes of Type 2, giving each child a 50% chance of inheriting the gene.
Can I be a carrier of Von Willebrand disease without having symptoms?
Yes. In autosomal recessive forms like Type 2N and Type 3, you can inherit one mutated gene and be a carrier. Carriers do not have the active clinical disease and are generally healthy, though they might bruise slightly easier than average.
Should my partner get tested for Von Willebrand disease before we try to conceive?
It is highly recommended, especially if you have an autosomal recessive type of the disease. Testing your partner helps determine if they are a carrier, which clarifies the exact odds of your child inheriting the active condition.
Is it safe to get pregnant if I have Von Willebrand disease?
Yes, but it requires careful management by a specialist. Hematologists and high-risk obstetricians can use highly effective treatment protocols, factor concentrates, and medications to keep you and your baby safe during pregnancy and after delivery.

Questions for Your Doctor

5 questions

  • What is my exact subtype of Von Willebrand Disease, and does it follow a dominant or recessive inheritance pattern?
  • Do you recommend that my partner undergo genetic testing or a blood test before we try to conceive?
  • Can you refer me to a genetic counselor to discuss our specific family planning risks?
  • How should my current VWD treatment plan be adjusted if I become pregnant?
  • Will I need to deliver my baby at a specialized hospital or see a high-risk OBGYN to ensure a safe delivery?

Questions for You

3 questions

  • Has anyone else in my family been diagnosed with Von Willebrand Disease or experienced bleeding symptoms, and how did it affect them?
  • What specific concerns or fears do I have about passing this condition to a child, and how would understanding the exact odds help me?
  • How comfortable am I with my current hematologist's expertise in managing VWD during pregnancy, or do I need a second opinion?

References

References (10)
  1. 1

    Bleeding patterns in patients before and after diagnosis of von Willebrand disease: Analysis of a US medical claims database.

    Roberts JC, Malec LM, Halari I, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2022; (28(1)):97-108 doi:10.1111/hae.14448.

    PMID: 34761486
  2. 2

    A case of inherited type 1 and type 2A von Willebrand disease confirmed by diagnostic exome sequencing.

    Shim YJ, Park SY, Jung N, et al.

    Pediatric blood & cancer 2018; (65(10)):e27279 doi:10.1002/pbc.27279.

    PMID: 29893454
  3. 3

    Pharmacokinetics, efficacy, and safety of a plasma-derived VWF/FVIII concentrate (VONCENTO) for on-demand and prophylactic treatment in patients with von Willebrand disease (SWIFT-VWD study).

    Lissitchkov TJ, Buevich E, Kuliczkowski K, et al.

    Blood coagulation & fibrinolysis : an international journal in haemostasis and thrombosis 2017; (28(2)):152-162 doi:10.1097/MBC.0000000000000568.

    PMID: 27203734
  4. 4

    ADAMTS-13 and bleeding phenotype in von Willebrand disease.

    Boender J, Nederlof A, Meijer K, et al.

    Research and practice in thrombosis and haemostasis 2020; (4(8)):1331-1339 doi:10.1002/rth2.12442.

    PMID: 33313472
  5. 5

    [Von Willebrand disease type 3 falsely diagnosed as hemophilia A: a case report].

    Benlaldj D, Moueden MA, Seghier F

    Revue medicale de Bruxelles 2017; (38(1)):36-38.

    PMID: 28525200
  6. 6

    Diagnosis of von Willebrand disease in Western Mexico.

    Zavelia Padilla-Romo MG, Ornelas-Ricardo D, Luna-Záizar H, Rebeca Jaloma-Cruz A

    Haemophilia : the official journal of the World Federation of Hemophilia 2021; (27(1)):e78-e87 doi:10.1111/hae.14203.

    PMID: 33215800
  7. 7

    ASH ISTH NHF WFH 2021 guidelines on the diagnosis of von Willebrand disease.

    James PD, Connell NT, Ameer B, et al.

    Blood advances 2021; (5(1)):280-300 doi:10.1182/bloodadvances.2020003265.

    PMID: 33570651
  8. 8

    Ristocetin-Induced Platelet Aggregation (RIPA) and RIPA Mixing Studies.

    Frontroth JP, Favaloro EJ

    Methods in molecular biology (Clifton, N.J.) 2017; (1646()):473-494 doi:10.1007/978-1-4939-7196-1_35.

    PMID: 28804849
  9. 9

    Von Willebrand Disease and Pregnancy: Management Protocol From Labor to the Postpartum Period.

    Muñoz Vargas BA, Contreras Valero SJ, Aragon Mendoza RL, et al.

    Cureus 2024; (16(2)):e53465 doi:10.7759/cureus.53465.

    PMID: 38435184
  10. 10

    Examining international practices in the management of pregnant women with von Willebrand disease.

    Lavin M, Sánchez Luceros A, Kouides P, et al.

    Journal of thrombosis and haemostasis : JTH 2022; (20(1)):82-91 doi:10.1111/jth.15561.

    PMID: 34661341

This page explains the genetic inheritance of Von Willebrand disease for educational purposes only. Always consult your hematologist or a genetic counselor regarding your specific family planning risks and pregnancy management.

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