Von Willebrand Disease

Overview

Von Willebrand disease (VWD) is a common genetic bleeding disorder that affects the blood’s ability to clot properly. This condition occurs when a protein called von Willebrand factor, which helps blood cells stick together and form clots, is either missing or doesn’t work the way it should. Children with VWD may experience frequent nosebleeds, easy bruising, and other bleeding issues. While VWD can’t be cured, it can be managed with proper care and treatment.

Symptoms

Common symptoms of von Willebrand disease in children include:

  • Frequent Nosebleeds: Nosebleeds that are hard to stop and happen often.
  • Easy Bruising: Bruises that appear easily, often with little or no injury.
  • Heavy Periods (in girls): Menstrual bleeding that is heavier or lasts longer than normal.
  • Prolonged Bleeding: Bleeding that takes a long time to stop after cuts, dental work, or surgery.
  • Bleeding Gums: Gums that bleed easily, especially during brushing or flossing.
  • Blood in Urine or Stool: Signs of internal bleeding in the digestive or urinary systems.

Causes

Von Willebrand disease is usually inherited, meaning it is passed down from parents to their children. It occurs when there is a problem with the von Willebrand factor in the blood, which can be either too low or not working properly. There are three main types of VWD, with Type 1 being the mildest and Type 3 being the most severe.

Diagnosis

Diagnosing von Willebrand disease in children involves:

  • Family History: Discussing any family history of bleeding disorders can help identify the condition.
  • Blood Tests: Simple blood tests can measure the amount and function of von Willebrand factor and other clotting factors in the blood to confirm the diagnosis.
  • Bleeding Assessment: Evaluating the child’s bleeding symptoms and their severity.

Treatment Options

While there is no cure for von Willebrand disease, treatments are available to help manage symptoms and prevent complications:

  • Desmopressin (DDAVP): A medication that can increase the levels of von Willebrand factor in the blood, often used before surgeries or dental work.
  • Clotting Factor Concentrates: These are given to replace the missing or faulty von Willebrand factor in the blood.
  • Antifibrinolytic Medicines: These help prevent the breakdown of clots and are often used during dental work or for heavy periods.
  • Hormonal Therapy: For girls with heavy periods, hormonal treatments like birth control pills can help manage bleeding.
  • Avoiding Certain Medications: It’s important to avoid medications like aspirin that can worsen bleeding.

Patient Success Stories

At Gertrude’s Children’s Hospital, we are committed to providing the best possible care for children with Von Willebrand Disease. Here’s why families trust us:

“When our daughter was diagnosed with von Willebrand disease, we were worried about how it would affect her life. The team at Gertrude's Children's Hospital has been wonderful—they’ve provided us with the knowledge, support, and care we needed. Thanks to them, our daughter is doing great, and we know she’s in good hands.”

Mariaparent of a child with von Willebrand disease

Living with Von Willebrand Disease

While both are bleeding disorders, von Willebrand disease usually causes milder symptoms than hemophilia and involves a different protein in the blood that helps with clotting.

Many children with VWD can safely participate in non-contact sports. It’s important to talk with your child’s doctor to find out what activities are safe.

If your child has a bleeding episode, follow the care plan provided by your doctor, which may include using specific medications or treatments. If the bleeding is severe or doesn’t stop, seek medical help immediately.

Call-to-Action

If your child has been diagnosed with von Willebrand disease, our team at Gertrude’s Children’s Hospital is here to provide the expert care and support your family needs.

Contact us today to schedule an appointment or to learn more about our aplastic anemia treatment program.

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