“You’re only a carrier” – women and the language of haemophilia

Abstract

Women who have the gene variant for haemophilia are labelled solely as ‘carriers’ unless they have a factor VIII activity of ≤40%. This term, which describes an individual who can pass on a disorder but are themselves unaffected, reflects a legacy that extends from the 18th century to the present day. There is strong evidence that women labelled as carriers experience heavy periods, joint damage, pain and impaired quality of life. The label ‘carrier’ does not recognise this burden and is associated with guilt, stigma and difficulty accessing care. People living with a long-term disorder should now be described using person-first terminology and it is common to see the term ‘people with haemophilia’. The term ‘carrier’ should be limited to its application in genetics and not used as a catch-all label for women with haemophilia.

The views of women with bleeding disorders: Results from the Cinderella study

“…This was also recognised by Choi et al., who report women becoming aware of diagnosis only after delivery of an affected child and limited healthcare provider knowledge, information and support 9 . This is consistent with the difficulties WHC face 4,5,7,10 and most of these themes were shared by WBD. The Cinderella Study has highlighted the problems women encounter pre‐ and post‐diagnosis, even in known families, and endorses the ten principles of care formulated by specialists and patients' representatives to support timely, accurate diagnosis and equitable care to men, with recognition of the additional challenges faced by WBD 6 …”

“…1 In 2011, a Canadian study reported negative experiences with specialist and non-specialist HCPs amongst women diagnosed as haemophilia carriers. 10 It is disappointing to find that these problems are still prevalent today. There is a need to raise awareness about bleeding disorders amongst all HCPs and to empower affected women through education and advocacy.…”

“…In 1998, UK researchers described limitation of work and social life, and impaired QoL, in women with inherited bleeding disorders 1 . In 2011, a Canadian study reported negative experiences with specialist and non‐specialist HCPs amongst women diagnosed as haemophilia carriers 10 . It is disappointing to find that these problems are still prevalent today.…”