Beyond the bleed: Haemophilia patients fight invisible battles

Haemophilia is a rare inherited blood disorder in which the body lacks specific clotting factors needed to stop bleeding. [Courtesy]

When Humphry Luvumbi was born with severe haemophilia A, the condition was invisible to everyone around him.

He grew up like any other child, learning to walk, run, and play, unaware that his blood did not clot as it should. What set him apart was not an early diagnosis, but the slow realisation that his body reacted differently to ordinary childhood falls.

Haemophilia is a rare inherited blood disorder in which the body lacks specific clotting factors needed to stop bleeding. Without early diagnosis and preventive treatment, repeated internal bleeding leads to chronic pain, joint damage, disability, and long-term psychological trauma.

In Kenya, haemophilia remains significantly underdiagnosed. Ministry of Health estimates indicate that only about 1,200 people are currently on haemophilia care, while experts believe more than 5,000 Kenyans may be living with the condition. Limited screening, high diagnostic costs, and low public awareness mean many patients enter the health system only after irreversible damage has occurred. “I didn’t know what haemophilia was when I was young. I just knew that when I fell, things didn’t heal like other children,” Luvumbi said.

That difference became life-altering in 2007. While playing football, he injured his right knee. What should have been minor resulted in four months of hospitalisation, years on crutches, and permanent joint damage. “That injury didn’t just affect my knee. It changed how I see my body. I stopped trusting it,” he said.

Even before that incident, Luvumbi experienced unexplained swelling and excessive bleeding after minor falls. His elder brother also has haemophilia, and their mother realised survival would require persistence beyond routine hospital visits. “We wouldn’t be here without her. She refused to accept that this was normal,” Luvumbi said.

The family eventually connected with patient organisations, such as the Joseph Memorial Haemophilia Association and later the Kenya Haemophilia Association, which helped them access care and treatment. Long-term support from partners such as Novo Nordisk has been critical in keeping patients like Luvumbi alive.

Yet while access to medication improved, the emotional burden remained largely unaddressed. “In school, I had to explain myself constantly—why I couldn’t play, why I missed classes, why I was always careful. After some time, you get tired of explaining,” he said.

That fatigue often turned into isolation. Humphry describes feeling segregated, sometimes through overprotection, other times through disbelief.

Mental health challenges among people living with haemophilia are common, but rarely acknowledged. Anxiety, depression, and trauma often accompany the condition, especially among patients who have endured repeated hospitalisations or permanent disability. Yet psychosocial support is largely absent from care models. “You survive physically, but mentally you are always alert. You plan your life around what might go wrong,” Luvumbi explained.

Natasha Honan, senior manager at the Novo Nordisk Haemophilia and Hemoglobinopathies Foundation, says this psychological burden is one of the most overlooked aspects of care in low- and middle-income countries. “Haemophilia is not just a medical condition; it affects education, employment, mental wellbeing, and social inclusion,” Honan said.

Countries with early diagnosis and consistent preventive treatment report far fewer physical and mental health complications. “When prophylaxis is available from diagnosis, children grow up without joint damage and without the constant fear that shapes so many lives elsewhere. That is the standard we are working towards,” she added.

Luvumbi has seen this contrast firsthand. Through international conferences, he has met people with haemophilia from countries where early diagnosis and routine prophylactic treatment are standard. “In those places, children are treated from diagnosis. They don’t grow up with joint damage. That’s when I realised my injury didn’t have to happen,” he said.

Kenya has made progress in haemophilia care. Two decades ago, only a few hundred patients were known; today, nearly 2,000 are identified through awareness, advocacy, and improved diagnostics. Integrated clinics now serve both haemophilia and sickle cell patients, reducing fragmented care.

Dr Yvette Kisaka of the Ministry of Health says that blood disorders were long neglected. “Under our universal health coverage agenda, no Kenyan should be left behind.”

Kenya has introduced infant screening guidelines, expanded treatment protocols, and included haemophilia care within the Social Health Authority (SHA) benefits package. However, gaps remain, especially around psychosocial care.

Despite policy progress, access to treatment remains fragile. Factor replacement therapy can cost between Sh50,000 and Sh150,000 per dose, placing it beyond the reach of most families. Many patients still rely on donor-supported programmes.

Health experts warn that treating haemophilia without addressing mental health is incomplete care. What is needed next is formal integration of psychosocial and mental health support into haemophilia care.