Von Willebrand Disease
What is Von Willebrand Disease?
Von Willebrand disease is a lifelong bleeding disorder caused by a problem with your blood clotting process. People with this condition have low levels of a protein called von Willebrand factor, or the protein does not work properly. This protein helps platelets stick together and form clots to stop bleeding when you get injured.
Von Willebrand disease is the most common inherited bleeding disorder. It affects about 1 in 100 people, though many have mild symptoms and may not know they have it. The condition is passed down through families in your genes.
Unlike hemophilia which mostly affects men, von Willebrand disease affects men and women equally. The severity varies widely. Some people have only minor bleeding problems while others experience frequent nosebleeds, heavy periods, or excessive bleeding after surgery or dental work.
Symptoms
- Frequent or hard to stop nosebleeds lasting more than 10 minutes
- Heavy or prolonged menstrual bleeding that lasts more than 7 days
- Easy bruising with raised bumps on the skin
- Bleeding from cuts that takes a long time to stop
- Blood in urine or stool
- Excessive bleeding after dental procedures or surgery
- Bleeding gums after brushing or flossing
Many people with mild von Willebrand disease have few symptoms and may not be diagnosed until they have surgery or a dental procedure. Women often notice the condition first due to heavy menstrual periods.
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Causes and risk factors
Von Willebrand disease is a genetic condition you inherit from one or both parents. A mutation in the gene that controls von Willebrand factor causes your body to make too little of the protein or to make a version that does not work correctly. There are three main types of the disease based on how much factor you have and how well it works.
Risk factors include having a parent with the condition, as the disease runs in families. In rare cases, people can develop an acquired form later in life due to autoimmune disorders, heart disease, or certain cancers. This acquired type is not inherited and requires different treatment approaches.
How it's diagnosed
Diagnosing von Willebrand disease requires specialized blood tests beyond standard screening panels. Your doctor will order tests to measure von Willebrand factor levels in your blood, check how well the protein works, and look at your blood clotting time. A partial thromboplastin time or PTT test may show prolonged clotting, which can suggest a bleeding disorder.
Because test results can vary based on factors like stress, hormones, and inflammation, doctors often repeat testing to confirm the diagnosis. Talk to your doctor about specialized testing if you have a family history of bleeding disorders or unexplained bleeding symptoms. Rite Aid offers PTT testing as part of routine health monitoring, but specialized von Willebrand factor testing requires a separate order from your healthcare provider.
Treatment options
- Desmopressin medication to temporarily raise von Willebrand factor levels before procedures
- Replacement therapy with concentrated von Willebrand factor for severe bleeding
- Birth control pills or hormonal IUDs to reduce heavy menstrual bleeding in women
- Antifibrinolytic medications to prevent clot breakdown after dental work
- Avoiding medications that affect clotting like aspirin and ibuprofen
- Using caution with contact sports and activities with high injury risk
- Wearing medical alert identification in case of emergency
- Working with a hematologist who specializes in bleeding disorders
Frequently asked questions
Both are bleeding disorders, but they affect different clotting proteins. Von Willebrand disease affects von Willebrand factor and affects men and women equally. Hemophilia affects clotting factors VIII or IX and primarily affects men. Von Willebrand disease is more common but usually milder than hemophilia.
No, von Willebrand disease is a lifelong genetic condition that cannot be cured. However, it can be managed effectively with proper treatment and precautions. Most people with the condition live normal, active lives with appropriate medical care and awareness of their bleeding risk.
Most types of von Willebrand disease are inherited in an autosomal dominant pattern, meaning you only need one copy of the mutated gene from one parent to have the condition. Type 3, the most severe form, is autosomal recessive and requires inheriting the mutation from both parents. Genetic counseling can help families understand their inheritance risk.
Yes, most women with von Willebrand disease can have healthy pregnancies with proper planning and monitoring. Von Willebrand factor levels often rise during pregnancy, which can reduce bleeding risk. However, close monitoring is needed during delivery and postpartum when bleeding complications are more likely to occur.
Seek immediate medical attention for bleeding that does not stop after 10 to 15 minutes of direct pressure. Go to the emergency room for heavy bleeding, blood in urine or stool, severe headaches that could indicate brain bleeding, or bleeding after an injury. Always inform medical staff that you have a bleeding disorder.
No specific foods can fix the underlying protein deficiency in von Willebrand disease. However, eating iron-rich foods like lean meat, beans, and leafy greens can help prevent anemia from chronic blood loss. Avoiding alcohol is important as it can increase bleeding risk and interfere with clotting.
Yes, most people with von Willebrand disease can exercise and stay active. Low-impact activities like swimming, walking, and cycling are generally safe. Talk to your doctor before participating in contact sports or high-risk activities that could cause injury and bleeding.
Not always. PTT results can be normal in people with mild von Willebrand disease, especially type 1. The PTT may only be prolonged in moderate to severe cases or type 2 and 3 disease. Specialized von Willebrand factor testing is needed for accurate diagnosis, not just PTT alone.
Avoid aspirin, ibuprofen, and other nonsteroidal anti-inflammatory drugs or NSAIDs as they interfere with platelet function. Also avoid blood thinners like warfarin unless specifically prescribed by your doctor. Always check with your healthcare provider before taking new medications, including over-the-counter drugs and supplements.
Inform your surgeon and anesthesiologist about your condition well before any procedure. You may need preventive treatment with desmopressin or replacement therapy before and after surgery. Your hematologist should work with your surgical team to create a plan that minimizes bleeding risk during and after the operation.