Living, Caring, Learning – Early education, active lives and tailored treatment in haemophilia care

Abstract

Josipa, a haemophilia nurse in Croatia, describes how meeting 18-year-old twins with severe haemophilia A changed her views around joint health and activity in people with haemophilia. The twins had started prophylaxis at a young age, learning to self-infuse at a haemophilia summer camp, and were both sporty and active. Neither had experienced joint damage and, 20 years later, they continue to live active lives. Josipa reflects on her own experience of volunteering at a haemophilia summer camp and teaching young people with haemophilia to selfinfuse. She highlights the importance of talking with patients about their lives and understanding their lifestyle and circumstances to provide a treatment regimen tailored to the needs of the individual. Reflecting on the benefit of activity and exercise to joint health in people with haemophilia, Josipa describes how this has also inspired her to become a Nordic walking coach. She notes that access to more effective treatments has enabled a focus on quality of life in haemophilia care, and the importance of maintaining good physical health in an ageing haemophilia population.

Keywords

• haemophilia
• joint health
• physical activity
• therapeutic relationship
• nurses
• professional practice