The Problem with Women As “Just Carriers” for Bleeding Disorders

Classic medical teaching around hemophilia focused on X-linked inheritance: Males were affected, while females were carriers. But providers say that framework oversimplified the reality.

Women who carry a factor VIII or factor IX gene variant can still have low clotting factor levels and clinically significant bleeding symptoms. Some meet the criteria for hemophilia themselves.

At the same time, the ways women and girls experience bleeding can look different from the symptoms usually associated with bleeding disorders.

“A lot of it is reproductive tract bleeding — heavy menstrual bleeding, postpartum hemorrhage — and that is often not recognized as quickly as something like a joint bleed,” Maher says.

As a result, many women grow up believing their symptoms are simply part of being female, especially if similar experiences run through generations of a family.

“We have girls who come in and say, ‘My period lasts three weeks, and so does my mom’s, and so did my grandma’s and everybody else’s in my family. So, we always thought that was normal,’” says Tami Bullock, RN-BC, BSN, a nurse coordinator at the Iowa Hemophilia and Thrombosis Center in Iowa City.

Without awareness of what abnormal bleeding can look like, bleeding disorder symptoms often remain hidden in plain sight.

Source: National Bleeding Disorders Foundation, HemAware, September 2026