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Von Willebrand Disease Treatment

Von Willebrand disease (VWD) is a bleeding disorder that affects the blood’s ability to form clots. Symptoms of von Willebrand disease include bruising, nosebleeds, mouth bleeds, heavy menstrual cycles, or bleeding that is hard to stop after an injury or medical procedure.

Von Willebrand disease occurs when there are low levels of a protein in the blood called von Willebrand factor. Von Willebrand factor helps blood cells called platelets stick together to form a strong blood clot to stop bleeding.

There are 3 main types of von Willebrand disease: Types 1, 2, and 3. Type 1 von Willebrand disease is the most common form of the disorder. About 3 out of 4 people with von Willebrand disease have type 1. People with type 1 or type 2 von Willebrand disease might not have many bleeding problems. Type 3 von Willebrand disease is rare, but it is the most severe.

Von Willebrand disease is usually inherited or passed down from parent to child. Sometimes a person is not born with von Willebrand disease but develops it later in life. In most cases, von Willebrand disease is a mild disorder. However, patients with more severe disease are at higher risk for bleeding episodes that can be life-threatening.

Learn more about von Willebrand disease on the Together by St. Jude™ online resource.

Von Willebrand disease treatment

Treatment for von Willebrand disease is based on the type and severity of the disorder. If your child has type 1 von Willebrand disease, treatment may only be needed if they have surgery, a dental procedure, or a traumatic injury. If your child has more severe von Willebrand disease, they may need regular treatments to prevent or stop life-threatening bleeds.

Current therapies for von Willebrand disease include:

  • Desmopressin acetate (DDVAP) is a medicine that stimulates the release of more von Willebrand factor into the blood.
  • Von Willebrand factor replacement therapy may be used to replace the clotting factor that is low or missing in the blood.
  • Other medicines such as antifibrinolytic medicines and fibrin glue may be used to help the blood to clot.

With proper medical care, most children with von Willebrand disease can live a normal, active life.


Von Willebrand disease clinical trials

St. Jude offers clinical trials and research studies for children, teens, and young adults with bleeding disorders. Learn more about clinical research at St. Jude.

Recruiting
NCBP01: Safety Study of Unlicensed, Investigational Cord Blood Units Manufactured by the NCBP for Unrelated Transplantation

Study goal:

The primary purpose of this study is to examine the safety of administration of the unlicensed investigational NCBP HPC-CORD BLOOD products in a multi-institution setting.


Von Willebrand disease care at St. Jude

  • St. Jude is a federally approved Hemophilia Treatment Center and specializes in comprehensive care for patients with von Willebrand disease and other bleeding disorders.
  • The St. Jude Blood Disorders Program is an important resource for patients and families. Doctors and nurses at St. Jude are specially trained to take care of patients with von Willebrand disease.
  • St. Jude doctors and nurses work closely with many other services in the hospital to support the patients on multiple levels, such as with social work, child life, or physical therapy services.
  • St. Jude provides top quality clinical care and is at the forefront of bleeding disorders research.
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Seeking treatment at St. Jude

Patients accepted to St. Jude must have a disease we treat and must be referred by a physician or other qualified medical professional. We accept most patients based on their ability to enroll in an open clinical trial.

How to seek treatment

Contact the Physician / Patient Referral Office

Call: 1-888-226-4343 (toll-free) or 901-595-4055 (local)  | Fax: 901-595-4011 | Email: referralinfo@stjude.org | 24-hour pager: 1-800-349-4334

 

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