“He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care

Abstract

Recent treatment option advances in haemophilia care have contributed to a discourse of ‘normality’ around the condition, in which people with haemophilia (PwH) are increasingly expected to live ‘normal’ lives unburdened by their condition.

Keywords

• haemophilia
• community
• embodied knowledge
• embodied sense of the disease
• normality
• chronic illness
• new era of care