Shining the light on haemophilia and bleeding disorders in women and girls

Each year, on April 17, the world raises awareness about haemophilia. The theme for World Haemophilia Day 2025 is “Women and Girls Bleed Too.” This theme challenges the belief that bleeding disorders only affect males. While haemophilia is more common in males, many females also suffer from these disorders. Often, their symptoms go undiagnosed or misdiagnosed.

What is a Bleeding Disorder?

Bleeding disorders are conditions where blood does not clot properly. This occurs due to missing or malfunctioning clotting components. Individuals may experience prolonged bleeding after injuries, surgeries, or childbirth. These disorders can be inherited from parents or acquired later in life.

Types of bleeding disorders include:

- Haemophilia A and B: Inherited conditions affecting mostly males with deficient factors VIII or IX.
- Von Willebrand Disease (VWD): The most common inherited disorder affecting both genders.
- Other rare disorders: Include platelet function issues and deficiencies of other clotting factors.

Common Signs and Symptoms:

Signs of bleeding disorders include:

- Frequent nosebleeds or bleeding gums
- Heavy or prolonged menstruation
- Unexplained bruises
- Blood in urine or stools
- Painful swollen joints from internal bleeding
- Excessive bleeding after surgery or childbirth

Management:

These disorders cannot be cured but can be managed effectively. Treatments may involve clotting factor replacement therapy and hormone treatments for menstrual symptoms. Early diagnosis is crucial for improving quality of life.

The Global and Ghanaian Landscape

According to the World Federation of Haemophilia’s 2023 survey, there are 390,630 individuals with bleeding disorders worldwide:

- 56% have haemophilia
- 26% have von Willebrand Disease (vWD)
- 18% have other bleeding disorders

Of this population, 65% are male and 34% are female. This shows many females experience unnoticed symptoms.

In Africa, an estimated 93,985 people live with haemophilia; however, only 8% are identified. In Ghana, around 7,131 people are estimated to have haemophilia but only 525 cases are diagnosed. This indicates serious gaps in diagnosis and access to care.

Many people in Ghana may live with undiagnosed bleeding disorders—especially women and girls.

A Silent Burden on Women and Girls

Females can experience symptoms as carriers of the haemophilia gene or through other inherited conditions like VWD.

Women and girls may face:

- Heavy menstrual bleeding
- Excessive bleeding during childbirth
- Unexplained bruising

Often they are told heavy periods are normal when they might indicate a disorder. We must take their symptoms seriously.

A Call to Action

This year’s theme reminds us that we need change:

- Women and girls bleed too.
- They deserve equal access to diagnosis and treatment.
- Their voices must be heard.

We should launch public education campaigns addressing care inequities. Creating safe spaces for women to share experiences is essential.

In Ghana, institutions like Korle Bu Teaching Hospital are making strides in haemophilia care with support from various organizations. However, critical gaps remain in diagnostics and treatment access.

Addressing these challenges requires collective action from government bodies and civil society organizations. Everyone living with a bleeding disorder deserves equitable care—regardless of gender or financial means.

“Women and Girls Bleed Too” is not just a theme; it’s a truth we must acknowledge.

Let us ensure no woman or girl with a bleeding disorder in Ghana is left behind. By listening to them and providing necessary care, we improve outcomes for families and communities across our country.