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Cook Children's Hematology and Oncology
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von Willebrand diseaseCook Children's

von Willebrand disease

The human blood contains platelets that stick to holes in blood vessels and patch them up. In a way, platelets are like a built-in bandage. They stick to a wound and to each other to help form clots that stop the bleeding. This “sticky” factor is a protein called von Willebrand, named for the scientist who discovered it.

Sometimes the human body doesn’t contain enough of the von Willebrand protein, or the protein doesn’t work like it should. When this happens, the platelets don’t do their job and a wound can bleed for a very long time. Fortunately, with the proper treatment, children, teens and adults can live healthy, active lives.

The hematology team at Cook Children’s has a great deal of experience in diagnosing and treating children, teens and young adults with this disorder. We offer a full range of services from diagnosis to treatment

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What is von Willebrand disease?

Von Willebrand disease (vWD) is an inherited, or genetic, bleeding disorder, meaning it is passed down through families in gene cells. It is the most commonly inherited bleeding disorder. When you have von Willebrand disease your body doesn’t have enough of the von Willebrand protein so your platelets can’t stick.

The blood contains twelve factors that work together to make your blood clot, or on the surface to scab over, so that you can stop bleeding. People with von Willebrand are missing one of the factors, the von Willebrand factor, or only have a small amount of that factor.

There are three major types of von Willebrand disease:

Who gets von Willebrand disease?

Von Willebrand disease is a genetic disorder that is inherited from one or both parents. Type 1 and type 2 von Willebrand disease are usually, though not always, the result of inheriting the gene from one parent. Sometimes, both parents can have the gene that causes the disease. When that happens, the child may inherit both genes, which typically results in type 3 von Willebrand.

If an adult has the disease, there is a fifty percent chance that their children will inherit the defective gene.

Von Willebrand occurs equally in both boys and girls, across all ethnic and socio-economic groups. For girls, disease can become more complex after the start of menstruation.

von Willebrand symptoms & complications

Symptoms
Many people with von Willebrand disease have very mild symptoms, and some people never have any symptoms. The most common sign that there is a problem is abnormal bleeding. And even then, the disease may go unnoticed. People with von Willebrand don’t bleed more than other people, they bleed longer. In fact, they typically bleed very slowly. This is sometimes called oozing.

People with cuts or nosebleeds ooze on the outside where the blood can be seen. Oozing can also happen on the inside of the skin, like a bruise. Internal oozing happens deep inside the body where it can’t be seen. Sometimes internal bleeding will cause pain or swelling; because the bleeding can’t be seen, this can put a person at increased risk for illness or even death.

Some of the more common symptoms that may appear include, but are certainly not limited to:

Complications
There are many possible complications from von Willebrand disease, some of which are:

Precautions

Call your doctor immediately if your child experiences any excessive or unexplained bleeding.

Testing and diagnosis

Because the symptoms can be mild, or internal, von Willebrand disease can be difficult to diagnose and often goes undetected. If your child has any symptoms of a bleeding disorder, or if there is a family history of von Willebrand disease, your pediatrician will refer you to a pediatric hematologist for testing.

The hematology team at Cook Children’s will review your child’s medical history, physical examination and tests to determine if your child has the disorder and, if so, the type and severity.

Medical history
Your doctor will ask questions about your child’s medical history, and that of your family. Other issues the specialist may ask about might include:

Physical exam
During the physical exam, your doctor will look for:

Medical testing
The doctor will typically perform one or more of the following tests:

Tests may need to be done more than once because these levels may rise and fall over time in an individual. Also, the doctor will take a family medical history and recommend testing to see if other relatives have a bleeding disorder.

Treatment

Currently, there is no cure for this lifelong disease; but there are medications designed to help you manage it. Treatment for von Willebrand disease (VWD) is based on the type of VWD you have and how severe it is. Most cases of vWD are mild, and your child may need treatment only if they have surgery, tooth extraction, or an accident.

Your Cook Children’s pediatric hematologist will work with you and your pediatrician to create a treatment plan that is based on the type of von Willebrand disease your child has and the severity, as well as your preferences.

Your doctor will take into consideration your child’s health, other medications, and if there is a previous treatment history, that will be taken into consideration as well.

Medicines are used to:

Based on your child's diagnosis and specific needs, medicines may include:

For girls who have von Willebrand disease with heavy menstrual bleeding, your hematologist may recommend the following treatments:

Treating major and potentially life-threatenting bleeds:

It is critical that you are fully aware of the type of von Willebrand disease your child has. It is especially important to note to the medical team any unique circumstances that could put your child’s life at risk.

There is a lot of medical data and information you must keep track of and in emergency or urgent care situations, it can be difficult to remember everything. For this reason we recommend that you download a copy of Cook Children's FREE Family Medical Planner. That way, you can have all of your child’s medical information with you, and can simply hand the planner over to the emergency care or other medical care team. You can learn more about the planner and download a copy here.

We also recommend that you download the Emergency Care for Patients with von Willebrand Disease instructional manual for medical professionals and place a copy in your child’s Family Medical Planner. Not all physicians are familiar with this disease, and this manual may help to reduce risk to your child in an emergency. We realize it can be uncomfortable to offer directions to a medical team, but you are your child’s advocate. If you have questions or concerns, Cook Children’s hematology team will be more than happy to discuss them with you. Our goal is to help assure that your child can enjoy as healthy, active and happy lifestyle as possible.

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We are here to help.

If your child has been diagnosed, you probably have lots of questions. We can help. For information on support, research clinical trials, and resources, click here. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-4007.

 

 
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