Understanding the realities of living with haemophilia on World Haemophilia Day

Ahead of World Haemophilia Day on Friday, April 17, the World Federation of Haemophilia estimates that over one million people globally are living with bleeding disorders, many of whom remain undiagnosed. 

Health cover provide Affinity Health says haemophilia is a rare but significant bleeding disorder. An  inherited disorder that hinders blood’s ability to clot, it results in prolonged bleeding after injuries or medical procedures. While the more prevalent type, haemophilia A, affects approximately 1 in every 5,000 live male births, haemophilia B is less common. The disorder impacts individuals of all races and ethnic groups.

Understanding haemophilia

Typically passed down through generations, haemophilia is primarily a male condition due to its link to the X chromosome. However, females can be carriers and may exhibit symptoms. Early childhood is when most signs surface, particularly as children engage in more physical play and become more prone to bumps and bruises.

The severity of haemophilia varies:

• Mild haemophilia: Bleeding usually occurs following surgery or significant injury.
• Moderate haemophilia: Bleeding may happen after minor injuries.
• Severe haemophilia: Spontaneous bleeding can occur without apparent injury, especially in joints and muscles.

Should joint bleeds, particularly in areas like the knees or ankles, go untreated, they may lead to chronic joint damage.

Common myths about haemophilia

Despite growing awareness, numerous myths about haemophilia continue to exist:

• Myth 1: Individuals with haemophilia bleed faster. Fact: They do not bleed faster; they bleed for a longer duration because their blood fails to clot properly.
• Myth 2: A small cut can be deadly. Fact: With proper first aid, most small cuts are manageable, though internal bleeding poses greater risks.
• Myth 3: People with haemophilia should avoid exercise. Fact: Low-impact activities like swimming are beneficial, while high-contact sports require careful consideration.
• Myth 4: Haemophilia is contagious. Fact: It is an inherited condition, not an infectious disease.
• Myth 5: Haemophilia only affects children. Fact: It is a lifelong condition, often diagnosed in childhood but managed throughout adulthood.

Daily life with haemophilia

Advancements in treatment have significantly improved both life expectancy and quality of life for individuals with haemophilia. The primary treatment, clotting factor replacement therapy, replenishes missing components in the bloodstream and can be administered either on demand or prophylactically. Many patients and their families are trained to administer these infusions at home, reducing reliance on hospital visits.

Preventive care plays a vital role in managing daily life:

• Maintaining a healthy weight to alleviate joint stress.
• Wearing protective gear during physical activity.
• Avoiding medications that elevate bleeding risks.
• Regular check-ups with healthcare providers.

Dental health is equally important, as gum disease or dental procedures can increase bleeding risks. Early diagnosis, education for parents, and awareness of internal bleeding signs — like swelling or reduced joint movement — are essential for effective management.

Emotional and social impact

Living with haemophilia transcends physical health; it can also inflict emotional and social strains. Children might feel excluded from sports or activities, while adults face concerns about job security and medical expenses. Support from patient groups, counselling services, and community organisations plays a critical role in helping families navigate these challenges.

Encouragingly, advancements in treatment now ensure much better outcomes for individuals with haemophilia, with promising new developments in long-lasting clotting factors and ongoing research into gene therapy paving the way for more effective, simplified care.

When to seek medical attention

Although many bleeding episodes can be managed at home, immediate medical attention is crucial if patients experience:

• Head injury or suspected brain bleed.
• Severe abdominal pain.
• Neck or throat swelling.
• Persistent joint pain that does not improve.
• Heavy or uncontrolled bleeding.

Living with haemophilia entails continuous management and education, but it should not define a person’s capabilities or future. Enhancing understanding is vital for improving health outcomes and dispelling myths surrounding this condition.