Unlike hemophilia, which mainly affects males, VWD occurs equally in males and females but can be more severe in women due to bleeding from menstruation and childbirth.
Type 1 von Willebrand Disease is the most common type, affecting about 70%-80% of people with the disease. People with Type 1 VWD have the von Willebrand factor and it works normally but there is not enough to adequately control bleeding.
Symptoms vary greatly from person to person. Some individuals are asymptomatic (they have no symptoms at all), whereas others may have moderate to very severe bleeding complications. When symptoms first appear will also vary, ranging from infancy to adulthood.
Among the symptoms are persistent and frequent nosebleeds, blood in urine or stool, easy bruising, excessive bleeding from an injury, surgery, or minor cut, and bleeding from the gums or dental work (especially tooth extractions).
For women, symptoms include a heavy period (known as menorrhagia), presence of large blood clots, reproductive tract bleeding during pregnancy and childbirth, or hemorrhaging after childbirth. Anemia, fatigue, and shortness of breath are other possible symptoms of von Willebrand disease.
Among the more severe but considerably less common symptoms is internal bleeding such as swelling, gastrointestinal bleeding, and bleeding into the muscles and joints. Left untreated, these symptoms can be fatal.
While an individual may not experience symptoms of von Willebrand disease, the faulty gene can still be passed on to children. A child whose parent is a carrier for VWD should be checked for the disease. Early diagnosis is vital for a healthy, active, and normal life.
Hormone replacement to stimulate von Willebrand factor production:
Coagulation factors to replace low or missing VWF:
Contraceptives/estrogen to reduce menstrual bleeding severity:
Topical treatments for external injuries:
Routine vaccinations if human blood infusions are received to prevent diseases passed on through blood
Actively managing von Willebrand disease symptoms leads to better outcomes for VWD patients. This includes following treatment plans laid out by doctors and other specialists, taking medications consistently, and obtaining infusions when needed.
NCHS is proud to have a team of experienced bleeding disorder specialists who function as an extension of your care team. We provide discreet delivery services, help coordinate care, navigate health insurance matters, and provide support to individuals with von Willebrand disease and their families. To learn how we can best care for you, contact a patient support specialist.
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