A Blessing in a Little Syringe

Kyle Small’s Story and Why Haemophilia Awareness Matters

Haemophilia is often misunderstood. Many people believe it means bleeding excessively from small cuts, when in reality, the most serious danger lies beneath the surface. Haemophilia is a hereditary blood disorder passed from mother to child, where the blood does not clot properly. People with haemophilia do not bleed faster than others, but they bleed for much longer, and internal bleeding, especially into joints, muscles, or vital organs like the brain, can be life‑threatening.

Kyle Jonathan Small knows this reality all too well.

Living With Haemophilia: Kyle’s Journey

Kyle, now 18, lives with severe Haemophilia A, the most common form of the condition, caused by low levels of clotting factor VIII. Diagnosed at birth, haemophilia has shaped his life from the very beginning. While many children grow up running, jumping, and playing freely, Kyle’s childhood came with strict rules: do not run, do not jump. Breaking these rules often resulted in intense pain as blood filled joints like his knees, ankles, or elbows, leaving them swollen, burning hot, and immobile.

As Kyle grew older, the internal bleeds became more frequent and sometimes occurred without warning. At times of emergency, he had to wait — in pain — for a nurse or a family member to help administer treatment. By the age of 12, Kyle had learned to inject himself, pushing needles into his veins in an effort to prevent further damage and reduce the severity of bleeds. Over time, repeated injections became increasingly difficult, often requiring multiple attempts.

This was the only life Kyle knew, and he learned to accept it — until change became possible.

A Turning Point: Access to Better Treatment

While receiving care at Groote Schuur Hospital, Kyle’s grandmother raised concerns about the toll his current treatment was taking. That conversation led to hope in the form of Hemlibra, a preventative treatment designed to reduce bleeding episodes in people with haemophilia A.

Kyle’s care team, including Sister Queensy, Sister Anne, and Dr Simba, advocated fiercely on his behalf. Although his medical aid initially refused coverage, the hospital team persisted, organising additional procedures, consultations, and a radio synovectomy to demonstrate the urgency and necessity of the medication. All of this took place during Kyle’s matric year, making an already difficult time even more challenging.

Eventually, persistence paid off. Approval was granted, and Kyle began treatment with Hemlibra.

Life Beyond Survival

The impact has been life‑changing. Kyle no longer has to struggle daily with damaged veins or live in constant fear of spontaneous internal bleeding. He can go weeks without treatment and finally feels able to live more freely — not just surviving but truly living.

Kyle calls Hemlibra “a blessing in a little syringe.” His hope now is that other children and families facing haemophilia can experience the same relief — and that no child has to learn how to inject themselves simply to get through the day.

Understanding Haemophilia

There are two main types of haemophilia:

• Haemophilia A (Classical Haemophilia): Caused by low levels of factor VIII

• Haemophilia B (Christmas Disease): Caused by low levels of factor IX
  

Treatment focuses on replacing the missing clotting factor and preventing bleeding episodes. The gold standard of care is preventative (prophylactic) treatment, often given two to three times per week. With appropriate care and access to treatment, people with haemophilia can attend school, work, play sports, and participate fully in daily life.

Common symptoms include:

• Prolonged bleeding after injury or surgery

• Easy bruising

• Frequent nosebleeds

• Bleeding into joints and muscles

• Internal bleeding

Repeated joint bleeds are especially serious, as they can lead to long‑term joint damage and chronic pain.

A Broader Bleeding Disorder: von Willebrand Disease

Closely related to haemophilia is von Willebrand Disease (vWD) — the most common inherited bleeding disorder, affecting up to 3% of the population. It occurs when the body has too little von Willebrand factor or when the protein does not work properly, impacting clot formation and factor VIII levels.

Symptoms are often mild and may go undiagnosed, making awareness and early testing crucial.

Why Awareness Matters

Kyle’s story highlights why haemophilia awareness is so important. Awareness leads to earlier diagnosis, better treatment access, stronger advocacy, and improved quality of life. It ensures that children can be children, families can find support, and patients are seen as people — not just medical cases.

By sharing stories like Kyle’s, we shine a light on the realities of bleeding disorders and help create a future where no one has to suffer in silence.

Awareness saves joints. Awareness saves lives.