Helping women get answers about their health.
There’s a common misconception that only men can have hemophilia. Women have been traditionally thought of as carriers who can pass on the hemophilia gene but don’t experience symptoms. That’s not the case. Like men, they can show symptoms and be diagnosed with hemophilia.
Let’s look at the facts about women and hemophilia. Understanding this information can help you work together with your doctor to make the best decisions for your health and your family.
Women with the hemophilia gene have a 50% chance of passing it on
Fact:
Women who have the hemophilia gene are considered carriers of the gene. Whether they show symptoms or not, they have a 50% chance of passing it on to a child.
50% of women who are hemophilia carriers have factor levels below 50%
Fact:
50% of girls and women who are carriers for hemophilia have factor activity levels below 50%.
Hemophilia severity is determined by factor activity levels
Fact:
Factor activity levels” refer to the percentage of active clotting protein in your blood, which can determine your severity level.
What it means to be a carrier
Women who are carriers should be aware of the risk of passing on the gene to their children. Baby boys would have a 50% chance of having hemophilia and baby girls would have a 50% chance of also being carriers. If your family has a history of hemophilia, talk to your doctor about the considerations involved in having children.
Women can have hemophilia too
Women who carry the hemophilia gene can also be diagnosed with hemophilia. Diagnosis in women is increasing, likely due in part to greater awareness that women can have the condition. At the same time, many women who experience abnormal bleeding have yet to be diagnosed.
It can be hard to know whether the bleeding you experience is normal or abnormal. If any of the signs or symptoms below seem familiar to you, consider reaching out to your doctor to tell them what’s going on.
The common signs of hemophilia in women include:
Heavy menstrual periods
Low iron or have anemia
Frequent nosebleeds that last longer than 10 minutes
Bleeding from cuts lasting longer than 5 minutes
Easily bruised
(raised and larger than a quarter, happening on a weekly basis)
Joint bleeds
(pain, swelling, unusual sensations, warmth, loss of motion)
Family history of a bleeding disorder
Heavy bleeding from surgery
If you or someone you care for is experiencing one or more of these symptoms, contact your doctor. Information, support, and treatment options may be available.
You are your own best advocate
Every day, people are becoming more aware of how hemophilia can affect women. By being proactive, asking questions, and sharing your story, you can empower yourself and others. Speaking up isn’t always easy, but the more you practice, the easier it becomes. For more information about women and hemophilia, download our guide to help inform conversations with your doctor.
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