Women with bleeding disorders

Women and girls bleed too. A mother, sister or daughter in a haemophilia family may be a carrier, may have mild haemophilia, or may have another bleeding disorder such as von Willebrand disease. Heavy periods are a symptom, not something to endure in silence.

Because the genes for factor VIII and factor IX sit on the X chromosome, women often have one changed copy and one working copy. Many have enough factor. Some do not. Lyonization, a new gene change, or rarer chromosome patterns can leave a woman with factor levels in the haemophilia range. She can pass the gene to a son or a daughter.

Symptoms worth testing

• Periods that last more than seven days, soak through protection hourly, or cause dizziness
• Bleeding after a tooth extraction, delivery or operation
• Nosebleeds and bruising that seem out of proportion
• A family history of haemophilia, even if the woman herself has never been tested
• Anaemia that keeps returning

Pregnancy and birth

A woman who may carry haemophilia should be offered factor testing before pregnancy if that is possible, and a written plan with the obstetric team and the bleeding-disorder centre. Factor levels can rise in pregnancy and then fall after birth, so the weeks after delivery still need watching.

A boy born into the family, or a girl who may be affected, should not have instruments used at birth unless the obstetric team has no safer choice. Circumcision, injections in the muscle, and surgery wait until the clotting test is known. The cord-blood test is a start. The centre will say when to repeat it.

Testing a pregnancy for haemophilia is a specialist service. It is not offered in every Nepali hospital. NHS can help a couple ask the right centre what is available. The decision belongs to the family.

Von Willebrand disease

Von Willebrand disease is the bleeding disorder most often found in women. It is not haemophilia. Treatment is different, and a factor VIII product alone may be the wrong plan. Mention heavy periods and a family history when you ask for a test.

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.