Haemophilia in women and girls

How haemophilia A and B are inherited, when women bleed, and why carrier is not the same as unaffected.

Inheritance in plain language

Haemophilia A and B are linked to the X chromosome. A woman who carries the gene may have low factor herself or pass the gene to children. Boys who inherit the gene typically have haemophilia; girls may have mild haemophilia or be carriers who still bleed.

Carrier on a lab letter does not mean ‘fine’. It means test the factor level and listen to symptoms.

When women and girls have haemophilia

Mild haemophilia in women may show as heavy periods, bruising, or bleeding after surgery or childbirth. Moderate haemophilia in girls is less common but real.

Von Willebrand disease is more common in women and is a different disorder with different treatment. Mention heavy bleeding when asking for any clotting test.

Testing pathway in Nepal

Ask for factor VIII and IX levels plus von Willebrand testing if periods or family history suggest it. Take results to a centre that treats women — not only paediatric boys’ clinics.

NHS can help you ask which hospital runs those tests near you this month.

Pregnancy and planning

Factor levels change in pregnancy and drop after delivery. Plan with obstetrics and the bleeding-disorder centre before conception if possible.

Newborn boys from haemophilia families need a plan before labour instruments are used. See the pregnancy read page for more detail.

This page is general information from Nepal Hemophilia Society. It is not a diagnosis or a treatment plan. A bleed, a head injury, or bleeding after an accident needs urgent hospital care. Ask your treatment centre before you change any treatment.