Campaign highlights the urgent need for awareness and care for women and girls with bleeding disorders
World Haemophilia Day is observed annually on April 17. The World Haemophilia Day 2025 theme is “Access for All: Women and Girls Bleed Too”. The theme specifically highlights the critical need for increased awareness, diagnosis, and treatment for women and girls with bleeding disorders. They are often underdiagnosed and underserved due to misconceptions about these conditions, primarily affecting males. It’s a global call to action to close the gaps in care for women and girls with bleeding disorders. This includes addressing delayed diagnoses, limited access to treatment, and a lack of understanding regarding their unique healthcare needs.
By focusing on women and girls, the aim is to improve their quality of life through proper recognition, diagnosis, treatment, and care, ultimately strengthening the entire bleeding disorders community.
Increased awareness is crucial for better diagnosis and access to care for the millions of people worldwide who remain without treatment.
World Haemophilia Day was initiated in 1989 by the World Federation of Haemophilia (WFH). The primary objectives of this day are to raise global awareness of bleeding disorders and emphasize that many individuals are not receiving the necessary care.
Since its inception, World Haemophilia Day has served as a platform to celebrate advancements in treatment, raise awareness, and emphasise the challenges of ensuring adequate care for everyone affected by bleeding disorders.
World Haemophilia Day provides an opportunity for the global bleeding disorders community, including individuals with these conditions, their families, caregivers, healthcare providers, and advocacy organisations, to come together. It reinforces the importance of support networks, mutual understanding, and continued efforts in research and treatment.
What is Haemophilia?
Haemophilia is a mostly inherited genetic disorder that impairs the body’s ability to make blood clots properly. This can lead to prolonged bleeding after an injury, easy bruising, and an increased risk of internal bleeding, especially in the joints and brain.
How Blood Clotting Works (Normally):
When a blood vessel is injured, the body initiates a complex process to stop the bleeding. This involves:
Platelets: These are small blood cells that stick together at the injury site to form a plug.
Clotting Factors: These are proteins in the blood that work in a specific sequence (the coagulation cascade) to create a stable fibrin clot that reinforces the platelet plug and stops the bleeding.
What Happens in Haemophilia:
In people with haemophilia, there is a deficiency or defect in one of the clotting factors, most commonly:
Haemophilia A: Deficiency in clotting factor VIII (factor eight). This is the most common type.
Haemophilia B (Christmas Disease): Deficiency in clotting factor IX (factor nine).
The severity of haemophilia depends on the number of clotting factors that are missing or not functioning correctly. People with severe haemophilia may experience spontaneous bleeding (bleeding for no apparent reason), while those with mild haemophilia may only bleed excessively after surgery or injury.
Symptoms of Haemophilia:
Prolonged bleeding: Bleeding for a longer time than expected after cuts, injuries, surgery, or dental work.
Easy bruising: Bruising more easily and having larger, deeper bruises.
Joint bleeding (hemarthrosis): Bleeding into the joints (knees, elbows, ankles), causing pain, swelling, stiffness, and potentially long-term damage. This is a very common complication.
Muscle bleeding: Bleeding into muscles, leading to pain, swelling, and tightness (hematoma).
Nosebleeds: Frequent and difficult-to-stop nosebleeds.
Bleeding gums: Bleeding from the mouth and gums, especially after dental procedures.
Blood in urine or stool.
Bleeding in the brain: A rare but life-threatening complication that can occur from injury or spontaneously.
In infants: Unexplained irritability, swelling, or bruising.
Causes of Haemophilia:
Inherited: The vast majority of cases are inherited, meaning the gene responsible for producing the necessary clotting factor is defective and passed down from parents to children. Haemophilia A and B are X-linked recessive disorders, meaning the gene is located on the X chromosome. This is why it more commonly affects males. Females can be carriers of the gene and may experience milder bleeding symptoms.
Acquired Haemophilia: In rare cases, haemophilia can be acquired later in life when the body’s immune system attacks and disables clotting factors.
Diagnosis of Haemophilia:
Medical history: Doctors will ask about a person’s bleeding history and family history of bleeding disorders.
Physical exam: To look for signs of bleeding or bruising.
Blood tests: Specifically, clotting factor tests (also called factor assays) are used to measure the levels of factor VIII and factor IX in the blood.
Treatment of Haemophilia:
The main goal of haemophilia treatment is to prevent and treat bleeding episodes. This is primarily done through replacement therapy, where the missing clotting factor is replaced in the bloodstream.
Clotting factor concentrates: These are commercially prepared products containing concentrated factor VIII or IX. They can be derived from human plasma (screened and treated to prevent virus transmission) or manufactured using recombinant technology (not derived from human blood).
Replacement therapy:
Prophylaxis: Regular infusions to prevent bleeding episodes, especially in severe haemophilia.
On-demand: Infusions given to treat a bleed that has already started or before surgery or other procedures.
Desmopressin (DDAVP): A synthetic hormone that can stimulate the release of stored factor VIII in some people with mild haemophilia A. It can be given intravenously or as a nasal spray.
Emicizumab (Hemlibra): A newer non-factor therapy for haemophilia A that mimics the function of factor VIII. It is given by subcutaneous injection.
Clot-preserving medications (antifibrinolytics): Such as tranexamic acid, can help prevent blood clots from breaking down, especially useful for mouth and nosebleeds.
Fibrin sealants: Applied directly to wounds to promote clotting.
Physical therapy: To manage joint damage caused by bleeding.
Gene therapy: An emerging treatment that aims to provide the body with a functioning gene to produce the missing clotting factor.
With proper diagnosis and treatment, people with haemophilia can often lead relatively normal and active lives. Management focuses on preventing bleeds and treating them promptly when they occur to minimise long-term complications.
The writer is a teacher at Higher Secondary School, Nehalpora, Pattan
Kousar Ahmed Rather
ko************@***il.com