Von Willebrand's Disease
What is von Willebrand's disease?
Von Willebrand's disease is a bleeding disorder. When you have this disease, it takes longer for your blood to form clots, so you bleed for a longer time than other people.
Normally, when a person begins to bleed, small blood cells called platelets go to the site of the bleeding and clump together to help stop the bleeding. If you have von Willebrand's disease, your blood doesn't clot well because you don't have a certain protein in your blood or you have low levels of it. This protein is called the von Willebrand factor. It helps your blood to clot by helping the platelets stick together.
The disease is mild in most people. It can stay the same or get better or worse as you get older.
What are the types of von Willebrand's disease?
There are three major types of the disease. They range from mild to severe.
What causes von Willebrand's disease?
Von Willebrand's disease usually is passed down through families (inherited). If you have the disease, your doctor may suggest that your family members get tested for it too.
It's possible to get acquired von Willebrand's disease later in life. This rare form of the disease isn't inherited. Instead, it seems to be caused by an immune system reaction in people who have certain diseases or take certain medicines.
What are the symptoms?
Bleeding a lot is the main symptom of von Willebrand's disease. How severe the bleeding is will be different for each person.
Symptoms of mild von Willebrand's disease include:
Symptoms of more severe von Willebrand's disease include those listed above and:
How is von Willebrand's disease diagnosed?
Von Willebrand's disease can be hard to diagnose. Some people with mild von Willebrand's disease bleed about the same amount as other people do. You may not notice any symptoms until you bleed a lot after an injury, dental procedure, or surgery.
Your doctor will ask you how often and how much you bleed. If your doctor thinks you may have a problem with clotting, he or she may suggest:
How is it treated?
Treatment depends on the type of von Willebrand's disease you have, how much you bleed, and your risk for heavy bleeding.
If you have a mild type of von Willebrand's disease, you may need to:
If you have severe von Willebrand's disease, your treatment may include:
If you have severe von Willebrand's disease, you most likely will need to take extra care to treat and prevent bleeding episodes. Avoid NSAIDs and blood thinners. Try to stay at a healthy weight and keep active. This helps prevent bleeding into muscles and joints. Avoid sports or activities where injury and bleeding are likely, such as football and hockey.
Tell all your doctors and other health professionals, such as your dentist, that you have this disease. Doctors need to know about it before you have any procedures, because you may be at risk for dangerous bleeding.
Most large hospitals have a "bleeding disorders" resource center. Learn the phone number to the center closest to you, and carry it with you.
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