Bleeding disorders like hemophilia are so associated with men that women often fight an uphill battle to get diagnosed. For many years, the prevailing belief was that female “carriers” could pass hemophilia to their male children, but they did not experience symptoms themselves, according to the World Federation of Hemophilia (WFH).
But women can and do have hemophilia and hemophilia symptoms. Hoping to remove barriers to care, the International Society on Thrombosis and Haemostasis (ISTH) changed the terminology in 2021 to highlight the bleeding symptoms and factor levels that female patients may have. As a result, female hemophilia patients can be classified as mild, moderate, severe, symptomatic or asymptomatic.
Women experience another bleeding disorder, von Willebrand Disease (VWD). The condition affects as many as 1% of the population, according to the WFH.
Bleeding Disorder Symptoms
Signs of a bleeding disorder include easy bruising, long or frequent nosebleeds and prolonged bleeding after dental procedures. Heavy menstrual bleeding can be a clue that a woman has a bleeding disorder, but it can be overlooked by doctors.
“It was in my health record that my father had hemophilia, but it was never a subject that had been brought up, even when I asked my doctors about my symptoms,” Dana Rotellini said during the webinar.
Watch a playback of the WFH webinar
Tracking data using bleeding assessment tools can help patients start productive conversations their physicians. The tools ask a series of questions to capture and score the severity of a patient's bleeding symptoms, providing data for the health care provider to evaluate.
Bleeding Assessment Tools (BATs)
Several assessment tools are available:
- The Pictorial Bleeding Assessment Chart (PBAC), has patients track monthly bleeding to measure its severity.
- The Menstrual Bleeding Questionnaire (MBQ) for women over 18 is a five-to-ten-minute survey that tracks pain, bleeding and quality of life.
- The Adolescent Menstrual Bleeding Questionnaire (aMBQ), created by Canadian researchers, is geared to teens.
Canadian researcher Dr. Meghan Pike is working with a team to launch a Canadian mobile app called “We Thrive.” The app, only available in Canada, incorporates the PBAC and the aMBQ questionnaires.
“Unanimously, users identified that the We Thrive app helped them have a better understanding of their menstrual period, particularly the symptom tracker, which is helpful in understanding and predicting their periods,” Pike said.
If a doctor suspects a bleeding disorder, lab tests can confirm or rule it out as the cause of heavy bleeding, which also can impact women in childbirth.
Globally, women are fighting for the right to be heard, said speaker Amanda Brito del Pino, who shared the difficulty of being diagnosed in Uruguay. Go to doctor appointments with data from an assessment tool and think ahead about what you want to ask, she said.
“When you go to the HCP visit, we patients can set the agenda. What do you want to discuss during this visit? Sometimes, it's good to have a list,” she said. “Fight for your rights, take care of your health.”
Learn more about women and bleeding disorders on the World Federation of Hemophilia's eLearning educational platform.
