Unlike many other bleeding disorders, it’s normal to not find out your child has von Willebrand disease (VWD) until they’re a little older. Often, there aren’t symptoms until between the ages of 8-14. And then something happens. Maybe it’s a tooth cleaning that bleeds a little too much. Or a first period that ends in the emergency room. These events are scary for kids, and scary for their parents as well.
At UVA Health Children’s, our bleeding disorder experts treat many children with VWD. In addition to offering all treatment options, we also can provide additional support for your family.
What Is Von Willebrand Disease?
Von Willebrand factor (VWF) is a protein that helps blood clots to form. When people don’t produce enough of this protein on their own, they have von Willebrand disease (VWD).
Without enough VWF, blood doesn’t clot as easily as it should. That leads to excessive bleeding.
VWD is the most common bleeding disorder. Because most people have mild symptoms, they may not realize that they have it.
What Are the Symptoms of Von Willebrand Disease?
Not all cases of VWD are the same. Most people have very mild symptoms. These people may not need any treatment at all. For others, it’s severe.
Symptoms include:
- Easy bruising
- Frequent nosebleeds
- Heavy menstrual bleeding
- Bleeding from cuts or injuries for a long time
- Bleeding after dental procedures
- Excessive bleeding during or after surgery
Special Care for Heavy Periods
Many teenagers first find out they have a bleeding disorder when their period starts. This can make an already emotional time more complicated. Our Adolescent Bleeding and Clotting Disorders clinic is designed especially for this purpose.
Diagnosis & Treatment
How Is Von Willebrand Disease Diagnosed?
If your child comes to us with heavy bleeding, we’ll take a family history. VWD is often genetic, but sometimes the symptoms are so mild parents don’t know they have it.
We’ll then do several blood tests. Some of the blood tests we use to diagnose blood disorders include:
- Complete blood count
- Clotting assessments
- VWF measurement
- Factor VIII, factor IX, and ristocetin measurements
- Genetic testing
Von Willebrand Types
During diagnosis, we’ll also consider what type of von Willebrand disease your child has. There are 3 main types.
- Type 1- Minimal symptoms, no treatment generally needed
- Type 2- Some symptoms, especially during menstruation
- Type 3- Severe, can cause bleeding even without injury
Your type affects the severity of your symptoms and also what treatments we should consider.
Acquired VWD
When von Willebrand isn’t caused by a genetic mutation, it could be a symptom of another disorder. Conditions that affect bone marrow or immune cell function could lead to a loss of VWF factor.
These include serious conditions like lymphoma. If we find VWF without a genetic indicator, we'll work to find the underlying cause.
What Treatments Are Available for VWD?
We’ll talk with your family about the results of your tests and determine what our goals for treatment are.
While there’s no cure for VWD, there are many treatments. These treatments can improve the symptoms and make life better. Some people only want to take medication when they know they’re going to experience heavy bleeding (like before surgery). Others want to have continuous protection.
- Medication to address heavy menstrual bleeding
- Medication to stimulate VWF release
- Factor infusions of concentrated VWF before surgery or during heavy bleeding
We’ll help you figure out which option is best for you. We’ll also touch base at our follow-ups to see if your goals have changed, and talk through new treatment options.