“You’re only a carrier” – women and the language of haemophilia
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 da...
| Main Authors: | , |
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| Format: | Article |
| Language: | English |
| Published: |
Sciendo
2021-11-01
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| Series: | The Journal of Haemophilia Practice |
| Subjects: | |
| Online Access: | https://doi.org/10.2478/jhp-2021-0015 |
| _version_ | 1797832582251937792 |
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| author | Chaplin Steve Khair Kate |
| author_facet | Chaplin Steve Khair Kate |
| author_sort | Chaplin Steve |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-09T14:10:05Z |
| format | Article |
| id | doaj.art-a587c47f9b4646fc9bca1f6154f7d1ab |
| institution | Directory Open Access Journal |
| issn | 2055-3390 |
| language | English |
| last_indexed | 2024-04-09T14:10:05Z |
| publishDate | 2021-11-01 |
| publisher | Sciendo |
| record_format | Article |
| series | The Journal of Haemophilia Practice |
| spelling | doaj.art-a587c47f9b4646fc9bca1f6154f7d1ab2023-05-06T15:31:52ZengSciendoThe Journal of Haemophilia Practice2055-33902021-11-018112813210.2478/jhp-2021-0015“You’re only a carrier” – women and the language of haemophiliaChaplin Steve0Khair Kate1Medical writer, Haemnet, UK.Director of Research, Haemnet, UKWomen 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.https://doi.org/10.2478/jhp-2021-0015haemophiliawomencarriersgeneticsterminology as topic |
| spellingShingle | Chaplin Steve Khair Kate “You’re only a carrier” – women and the language of haemophilia The Journal of Haemophilia Practice haemophilia women carriers genetics terminology as topic |
| title | “You’re only a carrier” – women and the language of haemophilia |
| title_full | “You’re only a carrier” – women and the language of haemophilia |
| title_fullStr | “You’re only a carrier” – women and the language of haemophilia |
| title_full_unstemmed | “You’re only a carrier” – women and the language of haemophilia |
| title_short | “You’re only a carrier” – women and the language of haemophilia |
| title_sort | you re only a carrier women and the language of haemophilia |
| topic | haemophilia women carriers genetics terminology as topic |
| url | https://doi.org/10.2478/jhp-2021-0015 |
| work_keys_str_mv | AT chaplinsteve youreonlyacarrierwomenandthelanguageofhaemophilia AT khairkate youreonlyacarrierwomenandthelanguageofhaemophilia |