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von Willebrand Disease

What is von Willebrand Disease?

Von Willebrand Disease (vWD) is the most commonly known bleeding disorder, 100 times more prevalent than hemophilia. It is estimated that about 1% to 2% of the world’s population, or between 60 to 120 million people worldwide, has vWD compared to the estimated 400,000 with hemophilia. vWD affects males and females equally.

Our body’s blood contains multiple parts. One part, called platelets, are round, sticky cells that help plug or seal off tears in blood vessels. When a blood vessel is injured, platelets rush to the tear in the blood vessel. They stick to each other and to the wall of the blood vessel forming a platelet-plug that helps stop the bleeding. While there are many different bodily substances involved in forming the platelet plug, the most important is the vWD protein that works as “platelet glue”. A person will have vWD when there is not enough von Willebrand factor (protein) present in the body or when there is a malfunction of the von Willebrand factor.

Types and Symptoms

What are the types of vWD?

• Type I von Willebrand Disease: Type I affects about 70% to 80% of the people with vWD. Type I represents a low-level of vWD factor
• Type II von Willebrand Disease: Affects 15% to 30% of people with vWD. In Type II, the blood produces enough von Willebrand factor but it cannot be used properly. There are four subtypes of Type II. (Type 2A, 2B, 2M and 2N)
• Type III von Willebrand Disease: Type III is the rarest and most severe form. In Type III the body produces essentially no vWD factor

Major vWD Symptoms

• Easy bruising
• Frequent nosebleeds that last a long period of time
• Heavy or prolonged menstrual bleeding
• Prolonged bleeding following surgery, dental work, childbirth or injury

Diagnosis

vWD is complicated and takes many forms with different subtypes, and not all laboratories can perform the required testing. Therefore: FactorHealth recommends a thorough evaluation by a hematologist

Treatment

Several drugs are available to treat vWD. The type and amount will vary according to your bleeding history, subtype and the effectiveness of first aid measures. All treatment should be discussed with, and approved by your hematologist.

Specific drugs frequently used include:

• DDAVP – a hormone that comes in injection and nasal form. The nasal form is called Stimate. DDAVP stimulates the release of vWD in the blood vessel linings
• Female hormones are often prescribed to control menstrual bleeding
• Topical agents such as Gelfoam or Surgicel are used to assist with clot formation
• Amicar – helps prevent clots from being dissolved
• Factor VIII replacement products. Humate –P, Alphanate and Koate DVI in severe situations

Learning to live with a bleeding disorder

Shock and disbelief often accompany learning you or a loved one has a bleeding disorder. It is perfectly normal to experience many upsetting emotions and have a feeling of fear and loss of control. Gaining information and experience will lessen the fear over time and grant you more control over the situation. The more you learn, the more you can incorporate vWD into the routine of your daily life.

Help and Support is available

• To find out more call FactorHealth, toll-free 1-866-322-3461 or click here
• Connect with your nearest Hemophilia Treatment Center for comprehensive medical services. For a complete list of Hemophilia Treatment Centers, visit the National Hemophilia Foundation web site
• Join your local Bleeding Disorders Chapter. For a complete list of local chapters, visit the National Hemophilia Foundation web site

Chapters provide:

• Newsletters with information, educational articles and updates
• Parent support groups
• Organized events such as camps, family days and educational events

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