World Haemophilia Day: Women Can Have It Too, Here's the Truth

For many years, haemophilia has been widely misunderstood as a condition that only affects men. This misconception comes from how the disorder is inherited—through a gene passed down from parents that affects the body’s ability to form blood clots. Because of the way this gene is passed, men are more likely to show symptoms, which led to the outdated belief that women could only be “carriers” who do not experience any health problems themselves. However, medical research and clinical experience have shown that many women who carry the haemophilia gene can have lower levels of clotting factors and suffer from significant bleeding symptoms. 

World Haemophilia Day: Women Can Have It Too, Here's the Truth

Unfortunately, these women are often overlooked or misdiagnosed because their symptoms are not recognised as part of the condition. It is now increasingly accepted that women can be affected by haemophilia and, in some cases, require the same level of care and attention as male patients also.

Genetic Foundation

Haemophilia is a genetic bleeding disorder caused by mutations in the genes that produce clotting factor VIII (haemophilia A) or factor IX (haemophilia B), both located on the X chromosome. Since women have two X chromosomes, they can inherit one faulty gene and one healthy gene. Usually, the healthy gene balances things out. But sometimes, due to a natural process called X-chromosome inactivation (or lyonization), the healthy gene gets "switched off" in many cells. When this happens, the faulty gene becomes more active, leading to lower levels of clotting factors in the blood. As a result, some women can show real symptoms and may even be diagnosed as having haemophilia.

It is a myth that women cannot have haemophilia. In fact, if a woman’s clotting factor levels drop below 40% of the normal level, she can experience symptoms like heavy periods, easy bruising, or excessive bleeding after surgeries. Depending on how low the levels are, she may be classified as having mild, moderate, or even severe haemophilia. Rarely, some women inherit the faulty gene from both parents (homozygosity), have only one X chromosome (Turner syndrome), or undergo extreme lyonisation, making their symptoms just as serious as in male patients.

Many women who carry the haemophilia gene may show symptoms that are often overlooked or wrongly linked to other health problems. These symptoms can include heavy or long-lasting periods (known as menorrhagia), easy bruising, frequent nosebleeds, and bleeding more than usual during or after dental work. Some women may also experience prolonged bleeding after childbirth or surgery. In some cases, they may even have bleeding inside their joints or muscles, called joint bleeds and muscle haematomas—problems more commonly seen in males with haemophilia. These signs should not be ignored or assumed to be only related to gynaecological issues. Instead, they should be carefully examined by a blood specialist (haematologist) to check for possible bleeding disorders like haemophilia.

Importance of Diagnosis

Accurate diagnosis of haemophilia in women requires more than just family history. It involves factor assays to determine the levels of Factor VIII or IX, genetic testing to identify mutations, and bleeding assessment tools such as the ISTH Bleeding Assessment Tool. In India, access to these tests can be limited, particularly outside urban centres. However, it is imperative for clinicians to include haemophilia in the differential diagnosis when a woman presents with unexplained bleeding and a suggestive family history.

Medical Management in Women

Management strategies for symptomatic carriers and women with haemophilia must be personalised. For heavy menstrual bleeding, treatments such as tranexamic acid, hormonal therapy, or desmopressin may be prescribed. Iron supplementation is often necessary to address anaemia. Before any surgical or dental procedure, clotting factor replacement should be planned. 

During pregnancy, high-risk women need close monitoring by a multidisciplinary team comprising haematologists, obstetricians, and anaesthetists. Genetic counselling is also essential, particularly if the woman is considering pregnancy, to assess the risk of transmitting the condition.

India needs a well-rounded plan to tackle the often-overlooked issue of haemophilia in women. 

This should include routine screening for families with a history of haemophilia, genetic counselling (guidance about inherited risks) for women planning to have children, and easier access to factor assays (tests that measure clotting proteins) and genetic tests. 

Doctors—especially general physicians and gynaecologists—must be trained to identify and manage haemophilia in women. A national database that records both female carriers (those who carry the faulty gene) and women showing symptoms can help guide policies and ensure better care. The old belief that only men can have haemophilia is no longer true—many women experience real and impactful symptoms. With better testing, treatment options, and awareness, we can build a healthcare system that treats haemophilia in women with the attention and care it truly needs.

Authored by Dr Shashikant Apte, Director of Haematology, Sahyadri Hospitals, Pune.