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- Risk Factors
- The Mayo Clinic Experience and Patient Stories
Von Willebrand disease is a lifelong bleeding disorder in which your blood doesn't clot well. Most people with the disease are born with it, though its warning signs may not show up for years. Some people may suspect they have a bleeding disorder when they have heavy bleeding after a dental procedure or, for women, during a menstrual period.Most people with this condition inherited it from a parent. They have a faulty gene that causes problems with a protein important to the blood-clotting pr...
Many people with von Willebrand disease don't know it because the signs are mild or absent. The most common sign of the condition is abnormal bleeding. The severity of the bleeding varies from one person to another.If you have von Willebrand disease, you might experience: 1. Excessive bleeding from an injury or after surgery or dental work 2. Nosebleeds that don't stop within 10 minutes 3. Heavy or long menstrual bleeding 4. Blood in your urine or stool 5. Easy bruising or lumpy bruises
The usual cause of von Willebrand disease is an inherited abnormal gene that controls von Willebrand factor, a protein that plays a key role in blood-clotting. When you have low levels of this protein or it doesn't work as it should, small blood cells called platelets cannot stick together properly, nor can they attach themselves normally to the blood vessel walls when an injury has occurred. The result is interference with the clotting process, and, sometimes, uncontrolled bleeding.Von Wille...
The main risk factor for von Willebrand disease is having a family history of it. A parent can pass the abnormal gene for the disease to his or her child.Most cases are \\"autosomal dominant inherited\\" disorders, which means you only need an abnormal gene from one parent to be affected. If you have the gene for von Willebrand disease, you have a 50 percent chance of transmitting this gene to your offspring.The most severe form of the condition (type 3) is \\"autosomal recessive,\\" which means both...
Complications of von Willebrand disease may include: 1. Anemia. Women who experience heavy menstrual bleeding can develop iron deficiency anemia. 2. Swelling and pain. If abnormal bleeding occurs in the joints or soft tissue, swelling and severe pain can result. 3. Death from bleeding. Rarely, someone with von Willebrand disease may experience uncontrolled bleeding that can be life-threatening and needs emergency medical attention.
Because von Willebrand disease is usually an inherited disorder, consider having genetic counseling if you have a family history of this condition and you're planning to have children. If you carry the defective gene for von Willebrand disease, you can pass it on to your offspring, even if you don't have symptoms.
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- Nose bleeding
- Abnormal or easy bruising (also known as ecchymosis or hematoma)
- Bleeding of the gums
- Bleeding after surgery
- Who Is Affected
- Types of VWD
- Signs and Symptoms
VWD is the most common bleeding disorder, found in up to 1% of the U.S. population. This means that 3.2 million (or about 1 in every 100) people in the United States have the disease. Although VWD occurs among men and women equally, women are more likely to notice the symptoms because of heavy or abnormal bleeding during their menstrual periods and after childbirth.
This is the most common and mildest form of VWD, in which a person has lower than normal levels of VWF. A person with Type 1 VWD also might have low levels of factor VIII, another type of blood-clotting protein. This should not be confused with hemophilia, in which there are low levels or a complete lack of factor VIII but normal levels of VWF. About 85% of people treated for VWD have Type 1.With this type of VWD, although the body makes normal amounts of the VWF, the factor does not work the...
Most people who have VWD are born with it. It almost always is inherited, or passed down, from a parent to a child. VWD can be passed down from either the mother or the father, or both, to the child.While rare, it is possible for a person to get VWD without a family history of the disease. This happens when a “spontaneous mutation” occurs. That means there has been a change in the person’s gene. Whether the child received the affected gene from a parent or as a result of a mutation, once the...
The major signs of VWD are:People with VWD might have nosebleeds that: 1. Start without injury (spontaneous) 2. Occur often, usually five times or more in a year 3. Last more than 10 minutes 4. Need packing or cautery to stop the bleedingPeople with VWD might experience easy bruising that: 1. Occurs with very little or no trauma or injury 2. Occurs often (one to four times per month) 3. Is larger than the size of a quarter 4. Is not flat and has a raised lumpWomen with VWD might have heavy me...
To find out if a person has VWD, the doctor will ask questions about personal and family histories of bleeding. The doctor also will check for unusual bruising or other signs of recent bleeding and order some blood tests that will measure how the blood clots. The tests will provide information about the amount of clotting proteins present in the blood and if the clotting proteins are working properly. Because certain medications can cause bleeding, even among people without a bleeding disorde...
The type of treatment prescribed for VWD depends on the type and severity of the disease. For minor bleeds, treatment might not be needed.The most commonly used types of treatment are:This medicine (DDAVP®) is injected into a vein to treat people with milder forms of VWD (mainly type 1). It works by making the body release more VWF into the blood. It helps increase the level of factor VIII in the blood as well.This high-strength nasal spray (Stimate®) is used to treat people with milder forms...
- frequent or hard-to-stop nosebleeds that happen spontaneously, occur often (five times or more a year) or last longer...
- bruising that occurs after little or no trauma or injury, happens often (one to four times per month), is larger than a...
These are symptoms of von Willebrand disease, but by themselves, they don’t prove you have VWD. With Type 3, you may have all the symptoms of Type 1 and Type 2, plus episodes of severe bleeding ...
Von Willebrand disease (VWD) is a bleeding disorder in which your blood has trouble clotting. It is inherited, meaning it is passed down from parents to their children. People with von Willebrand disease sometimes experience heavier-than-normal bleeding from injury, surgery, and, in women, menstrual flow and childbirth.
- Side effects
Von Willebrand disease is a bleeding disorder. Its caused by a deficiency of von Willebrand factor (VWF). This is a type of protein that helps your blood to clot. Von Willebrand is different from hemophilia, another type of bleeding disorder. Bleeding happens when one of your blood vessels breaks. Platelets are a type of cell that circulates in your blood and clumps together to plug broken blood vessels and stop bleeding. VWF is a protein that helps platelets clump together, or clot. If your levels of functional VWF are low, your platelets wont be able to clot properly. This leads to prolonged bleeding. A genetic mutation causes von Willebrand disease. The type of von Willebrand disease that you have depends on whether one or both of your parents have passed a mutated gene on to you. For example, you can only develop type 3 Von Willebrand if youve inherited a mutated gene from both of your parents. If youve only inherited one copy of the mutated gene, youll develop type 1 or 2 von Willebrand disease.
According to the Centers for Disease Control and Prevention, von Willebrand disease affects up to 1 percent of the general population in the United States. Men and women develop von Willebrand disease at the same rate. But women are more likely to experience symptoms and complications due to the increased risk of bleeding during menstruation, pregnancy, and childbirth.
If you have type 2 von Willebrand disease, you have normal levels of VWF but it wont work properly due to structural and functional defects. Type 2 is divided into subtypes, including types: Your doctor will ask you questions about your personal and family history of abnormal bruising and bleeding. Type 3 tends to be the easiest to diagnose. If you have it, youll likely have a history of severe bleeding starting early in life. Along with taking a detailed medical history, your doctor may also use laboratory tests to check for abnormalities in your VWF levels and function. They may also check for abnormalities in clotting factor VIII, which can cause hemophilia. Your doctor can also use blood tests to learn how well your platelets function. Your doctor will need to collect a sample of your blood to conduct these tests. Then, theyll send it to a laboratory for testing. Because of the specialized nature of these tests, it may take up to two or three weeks to receive your results.
Type 3 is the most dangerous type of von Willebrand disease. If you have this type, your body wont produce any VWF. As a result, your platelets wont be able to clot. This will put you at risk of severe bleeding thats difficult to stop.
If you have von Willebrand disease, your symptoms will vary depending on which type of the disease you have. The most common symptoms that occur in all three types include: Type 3 is the most severe form of the condition. If you have this type, you have no VWF in your body. This makes episodes of bleeding difficult to control. It also raises your risk of internal bleeding, including bleeding in your joints and gastrointestinal system.
If you have von Willebrand disease, your treatment plan will vary, depending on the type of condition you have. Your doctor may recommend several different treatments. Your doctor may prescribe desmopressin (DDAVP), which is a drug recommended for types 1 and 2A. DDAVP stimulates the release of VWF from your bodys cells. Common side effects include a headache, low blood pressure, and fast heart rate. Your doctor may also recommend replacement therapy, using Humate-P or Alphanate Solvent Detergent/Heat Treated (SD/HT). These are two types of biologics, or genetically engineered proteins. Theyre developed from human plasma. They can help replace the VWF thats absent or working improperly in your body. To treat minor bleeding from small capillaries or veins, your doctor may recommend applying Thrombin-JMI topically. They may also apply Tisseel VH topically after you undergo surgery, but it wont stop heavy bleeding.
These replacement therapies arent identical and you shouldnt use them interchangeably. Your doctor may prescribe Humate-P if you have type 2 von Willebrand disease and are unable to tolerate DDAVP. They may also prescribe it if you have a severe case of type 3 von Willebrand disease.
Common side effects of replacement therapy with Humate-P and Alphanate SD/HT include chest tightness, rash, and swelling.
Aminocaproic acid and tranexamic acid are drugs that help steady clots formed by platelets. Doctors often prescribe them to people who are undergoing invasive surgery. Your doctor may also prescribe them if you have type 1 von Willebrand disease. Common side effects include nausea, vomiting, and clot complications.
If you have any form of Von Willebrand disease, its important to avoid drugs that can increase your risk of bleeding and complications. For example, avoid aspirin and nonsteroidal anti-inflammatory drugs, such as ibuprofen and naproxen. No matter what type of von Willebrand disease you have, you should let your healthcare providers know about it, including your dentist. They may need to adjust their procedures to lower your risk of bleeding. You should also let trusted family members and friends know about your condition in case you have an unexpected accident or need life-saving surgery. They can share important information about your condition with your healthcare providers.
Most people who have type 1 von Willebrand disease are able to live normal lives with only mild bleeding issues. If you have type 2, youre at an increased risk of experiencing mild to moderate bleeding and complications. You may experience worse bleeding in the case of infection, surgery, or pregnancy. If you have type 3, youre at risk of severe bleeding, as well as internal bleeding.
- Lydia Krause
Von Willebrand Disease is a common genetic condition that causes abnormal bleeding in people. In a nutshell, in this disease, there is either a lack of function or a decrease in a protein, von Willebrand Factor. This protein is necessary for the interaction between specialized cells called platelets and the blood vessel wall.
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