Every year on World Haemophilia Day, celebrated on April 17, the global medical community turns its attention to a condition long characterised as a man’s disease. However, beneath this traditional narrative lies a silent, growing crisis: thousands of Indian women who carry the haemophilia gene suffer from chronic, debilitating bleeding symptoms, yet remain trapped in a cycle of misdiagnosis.
While medical textbooks once labelled women as ‘passive carriers’, the data tells a far more urgent story. According to the World Federation of Hemophilia, nearly 33 per cent of people living with haemophilia globally are female, yet the Hemophilia Federation India notes a massive registration gap, with tens of thousands of women likely missing from official records. Experts now reveal that 1 in 3 women carrying the gene have clotting factor levels below 40 per cent—technically placing them in the same category as those with mild haemophilia.
Beyond the carrier label, haematologists are breaking down the medical bias that dismisses heavy periods and easy bruising as normal. This dismissal leads to more than just fatigue; it creates dangerous surgical risks and a lifetime of functional anaemia. By understanding the science of the symptomatic carrier and identifying your specific bleeding phenotype, you can bridge the gap between just a heavy period and life-saving haematological care.
The myth of the silent carrier
The belief that women cannot have haemophilia is not just outdated, it is biologically incorrect. The explanation lies in a complex genetic process called X-chromosome inactivation.
Dr Vijay Ramanan, senior consultant clinical haematologist at Ruby Hall Clinic in Pune, explains that the carrier label is often a dangerous oversimplification. “The concept of X-chromosome Lyonization explains why this label can be misleading. In every female cell, one of the two X chromosomes is randomly inactivated. If the X chromosome carrying the normal clotting gene is inactivated in a majority of cells, the defective gene becomes more functionally dominant,” Dr Ramanan notes.
This genetic lottery means a woman’s carrier status isn’t just a silent trait, it’s an active biological tug-of-war. “The result is a woman who, despite being a carrier, has clotting factor levels (Factor VIII or IX) low enough to produce symptoms comparable to mild or even moderate haemophilia. Many women who are labelled as ‘carriers’ may, in reality, experience active bleeding tendencies and require medical attention similar to male patients,” he adds.
The normal period fallacy
In the Indian context, the greatest barrier to diagnosis is often cultural. Heavy menstrual bleeding is frequently normalised within families, passed off as a routine hereditary trait rather than a medical red flag.
“In many Indian households, heavy menstrual bleeding is often normalised and dismissed as a routine occurrence,” Dr Ramanan further explains. However, he insists there are clear clinical markers that differentiate a heavy flow from a life-altering disorder. “One of the most important indicators is the frequency of pad or tampon use—soaking through protection every hour for several consecutive hours is not considered normal.”
Other warning signs include:
1. Menstrual bleeding lasting longer than seven days.
2. Passing large clots (greater than 2–2.5 cm).
3. The need for double protection to manage the flow.
The gynaecology versus haematology gap
When a woman seeks help for these symptoms, she often finds herself in a diagnostic loop. Because the primary symptom is menstrual, patients are almost exclusively treated by gynaecologists who may look for structural issues like fibroids or cysts, missing the underlying blood chemistry.
Dr Kunal Sehgal, managing director and chief pathologist at Neuberg Sehgal Path Lab, sees this gap daily. “I often see women with persistent heavy periods undergoing multiple ultrasounds or being started on hormonal therapy without improvement. The missing link is frequently a basic haemostasis evaluation. Not all bleeding is due to a uterine problem—conditions like mild clotting factor deficiencies or platelet function issues can present only as heavy menstrual bleeding. These are not picked up on imaging,” Dr Sehgal explains.
To fix this, the health expert advocates for a shift in protocol. He says, “Early collaboration between gynaecologists and haematology-focused diagnostics is essential to avoid years of misdirected treatment.”
The double burden of functional anaemia
Living with an undiagnosed bleeding disorder is a marathon of exhaustion. When a woman bleeds excessively every month, her body’s iron stores are permanently depleted, leading to a state experts call functional anaemia.
“Chronic undiagnosed bleeding often leads to ongoing iron loss, creating a silent but significant energy deficit. The body adapts, but at a cost. Simply giving iron supplements provides temporary relief if the bleeding source is not addressed,” says Dr Sehgal.
Dr Chandrakant Lahane, consultant haematologist at Sahyadri Super Speciality Hospital, emphasises the cognitive toll of this state. “These individuals continue to suffer from what has been referred to as ‘functional anaemia,’ where they are symptomatic of the condition without proper diagnosis, which in turn affects their cognitive function and work output. The result is a woman who is technically functioning but living with constant fatigue, low stamina, and impaired physical health,” Dr Lahane explains.
Hidden dangers in the operating room
The most perilous moment for an undiagnosed woman often comes during routine surgery. Without a known history of a bleeding disorder, procedures like a C-section, gallbladder removal, or even a simple tooth extraction can turn into a medical emergency.
“Bleeding tendencies that have not been diagnosed can really make things difficult during even minor operations. What`s more worrying is that in some of the milder disorders, routine tests may still appear normal. Not recognizing the problem means a greater risk of spontaneous bleeding, slower healing, or the requirement for transfusion,” warns Dr Sehgal.
Dr Ramanan adds, “In some cases, bleeding may not be immediate but can occur hours or even days after the procedure, making it more dangerous and difficult to manage.”
The self-audit: When to seek a haematologist
Because symptoms can be subtle or mucocutaneous (skin and mucus membranes) rather than the joint bleeds typically seen in men, women must perform a self-audit of their medical history.
Dr Ramanan shares a checklist of symptoms that warrant a specialised haematological evaluation:
1. The first period warning: If a girl`s very first period (menarche) was so heavy it required hospitalisation or a transfusion.
2. Subtle bleeding: Frequent nosebleeds or prolonged bleeding after minor beauty procedures like threading or waxing.
3. Post-trauma: Easy bruising from minimal impact and prolonged bleeding after dental work.
4. Obstetric history: Excessive bleeding after a miscarriage or postpartum haemorrhage.
Navigating the lab: Beyond basic tests
A major pitfall in the journey to diagnosis is the reliance on standard blood tests. Many women are told their blood work is normal because doctors only order basic screenings like bleeding time (BT) and clotting time (CT).
“These are often insufficient to rule out haemophilia or related disorders. In fact, these tests can appear normal even in individuals with mild to moderate disease,” says Dr Ramanan.
For a definitive answer, women should request:
1. Specific factor assays: (Factor VIII and Factor IX levels).
2. von Willebrand Factor (vWF) testing.
3. Comprehensive coagulation profiles: Including PT/INR and aPTT.
The language of advocacy
To break through medical scepticism, experts suggest that women use precise, clinical terminology when speaking to their doctors.
“In describing their symptoms, women need to use precise terminology. Saying `excessive menstrual bleeding` rather than `excessive periods,` and terms like `mucosal bleeding,` `easy bruising,` and `tendency to bleed` may encourage further investigation. Talking about disorders like haemophilia and von Willebrand disease might be useful as well,” advises Lahane.
Dr Ramanan agrees, “Explicitly asking for a coagulation workup including factor assays signals to the doctor that the patient is informed and requires more than a cursory glance at her symptoms.”
The safe list: Medications to avoid
For a woman with a suspected or confirmed bleeding tendency, the medicine cabinet can be a minefield. Many common over-the-counter (OTC) painkillers can inhibit platelet function, making bleeding significantly worse.
“Pain relievers such as Aspirin and Ibuprofen (NSAIDs) could contribute to further blood loss through their effects on platelets,” warns Dr Lahane.
He lists a few safe alternatives:
1. Paracetamol: Generally safe for pain relief and fever.
2. Tranexamic acid: A medication that can be prescribed by a haematologist to actively reduce heavy bleeding.
3. Hormonal therapies: Useful for managing periods, but only under the combined supervision of a gynaecologist and haematologist.
The path forward: Family screening
Finally, the experts stress that diagnosis should be a family affair. If a male relative is diagnosed with haemophilia, the ripple effect screening must begin.
“It is essential to evaluate female relatives—mothers, sisters, and daughters—even if they do not currently exhibit symptoms. Early identification allows for better planning during surgeries, childbirth, or other medical interventions, ensuring that appropriate precautions are in place,” says Ramanan.
World Haemophilia Day serves as a reminder that healthcare must be equitable. By moving beyond the carrier label and recognising the symptomatic woman, the medical community can finally provide these forgotten patients with the life-saving care they have always deserved.
