“What more can we ask for?”: an ethnographic study of challenges and possibilities for people living with haemophilia

Abstract

Haemophilia treatment has improved life expectancy as well as lowered annual bleed rates and treatment burden for recent generations of people with haemophilia (PwH). However, PwH still face significant disease-related challenges on a day-to-day basis.

Keywords

• haemophilia
• ethnography
• quality of life
• disease burden