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World Haemophilia Day is observed every year on April 17 to raise awareness about haemophilia and other bleeding disorders. This is especially important given that, according to the World Federation of Haemophilia, out of an estimated 815,100 cases worldwide, only 347,026 are diagnosed, including 276,900 severe cases.
World Haemophilia Day is celebrated to enhance diagnosis and access to treatment for all people living with these conditions. The 2025 theme for World Haemophilia Day is ‘Access for all: Women and Girls Bleed Too.’ This theme emphasises the necessity of improving diagnosis and treatment for girls and women experiencing bleeding disorders, a group often overlooked and lacking adequate care.
In line with this theme, our blog aims to raise awareness by shedding light on the condition, the everyday struggles of those affected, and the advanced treatment options that are now making a difference in the lives of people with haemophilia.
Synopsis
Understanding Haemophilia
Haemophilia is a rare bleeding disorder where the blood doesn’t clot properly, causing individuals to bleed more easily than others. While it typically can’t be cured, treatment can effectively manage the symptoms.
The condition is caused by a deficiency of a protein called a clotting factor, which is essential for proper blood clotting. Most people with haemophilia are born with the condition. Although it is possible to develop haemophilia later in life, known as acquired haemophilia, this form is very rare.
Haemophilia is inherited in an X-linked recessive pattern. Since females have two X chromosomes (XX)—one from each parent—and males have one X and one Y chromosome (XY), the condition is more likely to affect males. If a mother carries the gene for haemophilia on one of her X chromosomes and passes it on to her son, he will have the condition. However, fathers cannot pass haemophilia to their sons, as they contribute a Y chromosome.
Types of Haemophilia
Haemophilia is divided into types based on the missing clotting factor in the blood.
The two main types are:
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Haemophilia A, caused by low levels of factor VIII
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Haemophilia B, caused by low levels of factor IX
Both types have similar symptoms but need different treatments. The condition can be mild, moderate, or severe, depending on how much clotting factor is present. Less clotting factor means more severe symptoms and a higher risk of serious bleeding.
Symptoms of Haemophilia
The common symptoms of haemophilia include:
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Easy bruising starting from a young age
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Unexplained internal bleeding
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Joint pain and swelling
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Excessive bleeding after injuries or surgical procedures
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Unusually heavy menstrual bleeding
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Prolonged bleeding after childbirth
Symptoms of haemophilia often appear in early childhood, though in some cases they may go unnoticed until later in life.
Challenges Faced by People With Haemophilia
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Bleeding Episodes: In severe cases of haemophilia, patients may experience frequent internal bleeding. This bleeding can affect various organs and lead to serious complications.
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Joint Damage: Bleeding in the joints can cause pain, swelling, inflammation, warmth, and limited movement. The knees, elbows, ankles, shoulders, wrists, and hips are most commonly affected. The incidence of spontaneous joint bleeds increases with age, reaching up to 60% by age 65.
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Pain Management: Pain in haemophilia is often not well managed, which can lower quality of life and lead to chronic pain that is difficult to treat.
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Psychosocial Difficulties: Children with haemophilia often experience psychosocial challenges, such as limited participation in school or sports, lower academic performance, and increased anxiety or depression. Adults also report difficulties in work, family life, and social relationships.
Advances in Haemophilia Treatment
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Gene Therapy: AAV (adeno-associated virus)–based gene therapy is a new treatment approved for severe haemophilia A. Unlike current treatments that require regular injections, this one-time therapy aims to boost clotting factor levels long-term. However, it can only be given once due to the body developing antibodies against the virus.
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Extended Half-Life (EHL) Products: For severe haemophilia, the recommended treatment is to replace the missing clotting factor. Long-acting versions of EHL products offer benefits like fewer injections, better adherence, improved outcomes, and more personalised care.
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Tissue Factor Pathway Inhibitor (TFPI): TFPI is a protein that helps control blood clotting by limiting it at several points in the clotting process. In people with normal clotting, factors VIII and IX help balance this process to form clots when needed. Blocking TFPI with a targeted treatment could reduce its natural anticoagulant effect and promote better clotting.
Conclusion
Haemophilia is a rare bleeding disorder that affects the blood’s ability to clot, leading to easier and prolonged bleeding. World Haemophilia Day, observed annually on April 17, aims to raise awareness about haemophilia and other bleeding disorders. Communities need to be informed about the condition, its types, symptoms, associated challenges, and the latest treatment options. At Manipal Hospitals, our Department of Internal Medicine offers expert guidance from experienced doctors and advanced treatment options for these conditions.
FAQ's
If you notice any signs of unusual bleeding or easy bruising, see a doctor as soon as possible. The doctor will check for symptoms, ask about family history, and may refer you to a specialist. Blood tests will be done to see how long it takes for the blood to clot and to check the levels of clotting factors. This will help confirm if haemophilia is present.
Yes, as long as their condition is well managed. It is best to avoid contact sports, but safer activities like swimming, golf, or cycling are encouraged. With some care and protective gear, your child can stay active and enjoy sports.
If you notice signs of a bleed, such as pain, warmth, tingling, swelling, or stiffness, act quickly to reduce damage.
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Give the factor replacement right away
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Follow the PRICE method: Protect, Rest, Ice, Compress, Elevate
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Contact your Haemophilia Centre to report the bleed and schedule follow-up care
Bleeding disorders can affect both males and females. While severe haemophilia in females is rare, many women who carry the gene have mild haemophilia and experience similar symptoms, including heavy periods. The most common bleeding disorder in women is von Willebrand disease (vWD), which affects both sexes but can be more challenging for women due to menstruation and childbirth.
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