OPINION: The need for awareness, support, and advocacy for people affected by haemophilia

Every year on April 17th, World Haemophilia Day is celebrated to raise awareness about haemophilia and other bleeding disorders. 

This day focuses on educating people and advocating for better diagnosis, treatment, and support for those affected. The theme for 2025 is “Access for All: Women and Girls Bleed Too.”

This theme highlights the need for improved care for women and girls, who often remain undiagnosed and underserved.

Haemophilia is a rare genetic bleeding disorder caused by a deficiency in certain clotting factors, which prevents blood from clotting properly. 

This can lead to excessive bleeding after injuries, surgeries, or even spontaneous internal bleeding, especially in joints and muscles. 

While haemophilia is typically inherited and affects mostly males, women can also carry the gene. Early diagnosis and appropriate treatment are essential to manage the symptoms and avoid severe health issues. 

There are three main types of haemophilia: Haemophilia A, caused by mutations in the F8 gene, which makes clotting factor VIII; Haemophilia B, which occurs due to mutations in the F9 gene, affecting the production of clotting factor IX; and Haemophilia C resulting from a deficiency in factor XI, a rare form of the disorder.

Individuals with haemophilia may experience various symptoms, including prolonged bleeding, joint pain, swelling, and potential bone-related issues. 

In cases where haemophilia is undiagnosed, even minor injuries or surgeries can lead to serious internal bleeding, which can be life-threatening.

Women and girls with bleeding disorders face unique challenges that are often overlooked. Historically, haemophilia has been viewed as a male condition, resulting in underdiagnosis and delays in treatment for females. 

As a result, many women and girls suffer from prolonged bleeding episodes, misdiagnoses, and insufficient care. The World Health Organisation (WHO) shared some of the key insights we should consider as we observe World Haemophilia Day, which include: 

• Underdiagnosis and Misconceptions: Women have often been seen merely as carriers of haemophilia, leading to significant delays in diagnosis and treatment.

• Prevalence in Mild Cases: About 20 per cent of individuals with mild haemophilia are female, indicating that the condition in women is more common than previously recognised.

• Severe and Moderate Haemophilia: Women with severe or moderate forms of haemophilia are rare, comprising less than 0.5 per cent to just over one per cent of diagnosed cases in specialised treatment centres. Global Identification Gap: WHO notes that only around 100,000 women and girls worldwide have been diagnosed with haemophilia, von Willebrand disease, or other bleeding disorders. This suggests that many more remain undiagnosed.

• Unique Health Challenges: Women with haemophilia have additional concerns related to menstruation, pregnancy, and childbirth, which can complicate their condition and require tailored medical care.

To help support World Haemophilia Day and raise awareness about bleeding disorders, individuals and communities can take part.

Consider sharing your story. You can talk about your own experiences or those of a loved one with a bleeding disorder. This can help others who may be going through similar situations feel understood and supported.

Take the time to learn how bleeding disorders affect women and girls, and share this information with people in your community to help raise awareness. You can also reach out to healthcare institutions.

World Haemophilia Day serves as an important reminder of the ongoing need for awareness, support, and advocacy for those affected by haemophilia and other bleeding disorders, particularly women and girls who historically haven’t received the attention they deserve.

Dr Kairu is a Clinical Haematologist and BMT Expert at The Nairobi West Hospital.