There’s a good reason that hemophilia is linked to men in the minds of most people. Far more men than women are born with this bleeding disorder; but bleeding disorders do affect women too. Here’s the catch: with hemophilia often assumed as a “male” disease, when a woman does have hemophilia or another bleeding disorder, the diagnosis tends to take longer or be plagued with years of misdiagnosis. Approximately 1% of women in the United States have an undiagnosed bleeding disorder.
Women can have hemophilia, although a different bleeding disorder – called von Willebrand disease – is much more common. Von Willebrand disease, which is generally milder than hemophilia, actually occurs equally in males and females.
With von Willebrand disease, the blood doesn’t have enough of something called “von Willebrand factor,” which is a protein critical to the initial stages of blood clotting. A common scenario for women is to be born with this disease, but have no symptoms in childhood. Generally, the first symptom emerges as much heavier bleeding during menstrual cycles than other teen girls. These extremely heavy and long periods can greatly interfere with quality of life and lead to anemia. A woman with von Willebrand disease might also experience frequent, large bruises from minor trauma, frequent nosebleeds, and/or bleeding after dental work.
The situation often gets more critical during childbirth for a woman with von Willebrand disease, especially if she hasn’t been diagnosed. Heavy or prolonged bleeding or even hemorrhage can occur during or after childbirth. Specialized care during this time can prevent hemorrhage, especially if prophylactic treatment starts during the last trimester of pregnancy.
If a woman has another family member with a bleeding disorder or experiences extremely heavy periods along with other potential symptoms, it’s a good idea to consider the diagnosis of a bleeding disorder.
Rhynders PA, Sayers CA, Presley RJ, et al. Providing young women with credible health information about bleeding disorders. Am J Prev Med 2014 Nov;47(5):674-80.
Stoof SC1, van Steenbergen HW, Zwagemaker A, et al. Primary postpartum haemorrhage in women with von Willebrand disease or carriership of haemophilia despite specialised care: a retrospective survey. Haemophilia February 16, 2015 [Epub ahead of print].