Uneingeschränkter Zugang

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


Zitieren

Otto JC. An account of an hemorrhagic disposition existing in certain families. The Medical Repository and Review of American Publications on Medicine, Surgery and the Auxiliary Branches of Science 1803; 6:1–4. OttoJC An account of an hemorrhagic disposition existing in certain families The Medical Repository and Review of American Publications on Medicine, Surgery and the Auxiliary Branches of Science 1803 6 1 4 Search in Google Scholar

Hay J. Account of a remarkable hæmorrhagic disposition, existing in many individuals of the same family. New Engl J Med 1813; 2: 221–5. doi: 10.1056/NEJM181307010020302. HayJ Account of a remarkable hæmorrhagic disposition, existing in many individuals of the same family New Engl J Med 1813 2 221 5 10.1056/NEJM181307010020302 Open DOISearch in Google Scholar

Watson T. Lecture XV: Hæmorrhage. In Lecture on the Principles and Practice of Physic. The fourth edition, revised and enlarged. London: John W. Parker and Son, I857. Vol. 1, 254–255. Available from https://books.google.co.uk/books/about/Lectures_on_the_Principles_and_Practice.html?id=5jxAAAAAYAAJ&redir_esc=y (accessed 29 September 2021). WatsonT Lecture XV: Hæmorrhage In Lecture on the Principles and Practice of Physic The fourth edition, revised and enlarged London John W. Parker and Son 1857 1 254 255 Available from https://books.google.co.uk/books/about/Lectures_on_the_Principles_and_Practice.html?id=5jxAAAAAYAAJ&redir_esc=y (accessed 29 September 2021). Search in Google Scholar

Bemiss JH. Haemophilia. New Orleans Medical and Surgical Journal 1884; September: 165–178. BemissJH Haemophilia New Orleans Medical and Surgical Journal 1884 September 165 178 Search in Google Scholar

Rushton AR. Leopold: the “bleeder prince” and public knowledge about hemophilia in Victorian Britain. J Hist Med Allied Sci 2012; 67: 457–90. doi: 10.1093/jhmas/jrr029. RushtonAR Leopold: the “bleeder prince” and public knowledge about hemophilia in Victorian Britain J Hist Med Allied Sci 2012 67 457 90 10.1093/jhmas/jrr029 Open DOISearch in Google Scholar

Bulloch W, Fildes P. Haemophilia. Treasury of Human Inheritance. Parts V and VI. Eugenics Laboratory Memoirs XII. London: Dulau & Co, 1911. Available from https://wellcomecollection.org/works/pe2s8c7d/items?langCode=eng&manifest=2&canvas=1 (accessed 30 September 2021). BullochW FildesP Haemophilia. Treasury of Human Inheritance. Parts V and VI. Eugenics Laboratory Memoirs XII London Dulau & Co 1911 Available from https://wellcomecollection.org/works/pe2s8c7d/items?langCode=eng&manifest=2&canvas=1 (accessed 30 September 2021). Search in Google Scholar

Wilkinson JF, Israels MC, Nour-Eldin F. Unusual transmission of the haemophilic gene. Br Med J. 1957; 2: 1528–9. doi: 10.1136/bmj.2.5060.1528. WilkinsonJF IsraelsMC Nour-EldinF Unusual transmission of the haemophilic gene Br Med J. 1957 2 1528 9 10.1136/bmj.2.5060.1528 Open DOISearch in Google Scholar

Margolius A, Ratnoff OD. A laboratory study of the carrier state in classic hemophilia. J Clin Invest 1956; 35: 1316–23. doi: 10.1172/JCI103387. MargoliusA RatnoffOD A laboratory study of the carrier state in classic hemophilia J Clin Invest 1956 35 1316 23 10.1172/JCI103387 Open DOISearch in Google Scholar

Rizza CR, Spooner RJ. Treatment of haemophilia and related disorders in Britain and Northern Ireland during 1976–80: report on behalf of the directors of haemophilia centres in the United Kingdom. Br Med J (Clin Res Ed) 1983; 286(6369): 929–33. doi: 10.1136/bmj.286.6369.929. RizzaCR SpoonerRJ Treatment of haemophilia and related disorders in Britain and Northern Ireland during 1976–80: report on behalf of the directors of haemophilia centres in the United Kingdom Br Med J (Clin Res Ed) 1983 286 6369 929 33 10.1136/bmj.286.6369.929 Open DOISearch in Google Scholar

Srivastava A, Brewer AK, Mauser-Bumschoten EP, et al.; Treatment Guidelines Working Group, World Federation of Hemophilia. Guidelines for the management of hemophilia. 2nd edition. Haemophilia 2012; 19(1): e1–e47. doi: 10.1111/j.1365-2516.2012.02909.x. SrivastavaA BrewerAK Mauser-BumschotenEP Treatment Guidelines Working Group, World Federation of Hemophilia Guidelines for the management of hemophilia. 2nd edition Haemophilia 2012 19 1 e1 e47 10.1111/j.1365-2516.2012.02909.x Open DOISearch in Google Scholar

Srivastava A, Santagostino E, Dougall A, et al. on behalf of the WFH Guidelines for the Management of Hemophilia panelists and co-authors. WFH Guidelines for the management of hemophilia. 3rd edition. Haemophilia 2020; 26(S6): 1–158. doi: 10.1111/hae.14046. SrivastavaA SantagostinoE DougallA on behalf of the WFH Guidelines for the Management of Hemophilia panelists and co-authors WFH Guidelines for the management of hemophilia. 3rd edition Haemophilia 2020 26 S6 1 158 10.1111/hae.14046 Open DOISearch in Google Scholar

Pascual A. Women with haemophilia also exist. Lancet Haematol 2021; 8(1): e18. doi: 10.1016/S2352-3026(20)30409-9. PascualA Women with haemophilia also exist Lancet Haematol 2021 8 1 e18 10.1016/S2352-3026(20)30409-9 Open DOISearch in Google Scholar

Weyand AC, James PD. Sexism in the management of bleeding disorders. Res Pract Thromb Haemost 2020; 5: 51–54. doi: 10.1002/rth2.12468. WeyandAC JamesPD Sexism in the management of bleeding disorders Res Pract Thromb Haemost 2020 5 51 54 10.1002/rth2.12468 784507033537529 Open DOISearch in Google Scholar

Seale B. Patients as partners: Building collaborative relationships among professionals, patients, carers and communities. The King's Fund. July 2016. Available from https://www.kingsfund.org.uk/publications/patients-partners (accessed 30 September 2021). SealeB Patients as partners: Building collaborative relationships among professionals, patients, carers and communities The King's Fund July 2016 Available from https://www.kingsfund.org.uk/publications/patients-partners (accessed 30 September 2021). Search in Google Scholar

Crocker AF, Smith SN. Person-first language: are we practicing what we preach? J Multidiscip Healthc 2019; 12: 125–129. doi: 10.2147/JMDH.S140067. CrockerAF SmithSN Person-first language: are we practicing what we preach? J Multidiscip Healthc 2019 12 125 129 10.2147/JMDH.S140067 637192730799931 Open DOISearch in Google Scholar

Noble AJ, Robinson A, Snape D, Marson AG. ‘Epileptic’, ‘epileptic person’ or ‘person with epilepsy’? Bringing quantitative and qualitative evidence on the views of UK patients and carers to the terminology debate. Epilepsy Behav 2017; 67: 20–27. doi: 10.1016/j.yebeh.2016.10.034. NobleAJ RobinsonA SnapeD MarsonAG ‘Epileptic’, ‘epileptic person’ or ‘person with epilepsy’? Bringing quantitative and qualitative evidence on the views of UK patients and carers to the terminology debate Epilepsy Behav 2017 67 20 27 10.1016/j.yebeh.2016.10.034 28086189 Open DOISearch in Google Scholar

NHS England. Language Matters: Language and diabetes. June 2018. Available from https://www.england.nhs.uk/wp-content/uploads/2018/06/language-matters.pdf (accessed 29 September 2021). NHS England Language Matters: Language and diabetes June 2018 Available from https://www.england.nhs.uk/wp-content/uploads/2018/06/language-matters.pdf (accessed 29 September 2021). Search in Google Scholar

Chen GM, Pather SR, DeLisser HM. Trends in the use of common words and patient-centric language in the titles of medical journals, 1976–2015. JAMA Netw Open 2019; 2(3): e191083. doi: 10.1001/jamanetworkopen.2019.1083. ChenGM PatherSR DeLisserHM Trends in the use of common words and patient-centric language in the titles of medical journals, 1976–2015 JAMA Netw Open 2019 2 3 e191083 10.1001/jamanetworkopen.2019.1083 658330930901051 Open DOISearch in Google Scholar

National Human Genome Research Institute. Carrier. Available from https://www.genome.gov/genetics-glossary/Carrier (accessed 30 September 2021). National Human Genome Research Institute Carrier Available from https://www.genome.gov/genetics-glossary/Carrier (accessed 30 September 2021). Search in Google Scholar

Paroskie A, Gailani D, DeBaun MR, Sidonio RF Jr. A cross-sectional study of bleeding phenotype in haemophilia A carriers. Br J Haematol 2015; 170(2): 223–8. doi: 10.1111/bjh.13423. ParoskieA GailaniD DeBaunMR SidonioRFJr A cross-sectional study of bleeding phenotype in haemophilia A carriers Br J Haematol 2015 170 2 223 8 10.1111/bjh.13423 449010725832012 Open DOISearch in Google Scholar

Noone D, Skouw-Rasmussen N, Lavin M, et al. Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium. Haemophilia 2019; 25: 468–474. doi: 10.1111/hae.13722. NooneD Skouw-RasmussenN LavinM Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium Haemophilia 2019 25 468 474 10.1111/hae.13722 31034126 Open DOISearch in Google Scholar

Osooli M, Donfield SM, Carlsson KS, et al. Joint comorbidities among Swedish carriers of haemophilia: A register-based cohort study over 22 years. Haemophilia 2019; 25(5): 845–850. doi: 10.1111/hae.13831. OsooliM DonfieldSM CarlssonKS Joint comorbidities among Swedish carriers of haemophilia: A register-based cohort study over 22 years Haemophilia 2019 25 5 845 850 10.1111/hae.13831 31411798 Open DOISearch in Google Scholar

Gilbert L, Paroskie A, Gailani D, Debaun MR, Sidonio RF. Haemophilia A carriers experience reduced health-related quality of life. Haemophilia 2015; 21(6): 761–5. doi: 10.1111/hae.12690. GilbertL ParoskieA GailaniD DebaunMR SidonioRF Haemophilia A carriers experience reduced health-related quality of life Haemophilia 2015 21 6 761 5 10.1111/hae.12690 461913725930174 Open DOISearch in Google Scholar

Boban A, Lambert C, Lannoy N, Hermans C. Comparative study of the prevalence of clotting factor deficiency in carriers of haemophilia A and haemophilia B. Haemophilia 2017; 23: e471–e473. doi: 10.1111/hae.13298. BobanA LambertC LannoyN HermansC Comparative study of the prevalence of clotting factor deficiency in carriers of haemophilia A and haemophilia B Haemophilia 2017 23 e471 e473 10.1111/hae.13298 28689376 Open DOISearch in Google Scholar

Plug I, Mauser-Bunschoten EP, Bröcker-Vriends AH, et al. Bleeding in carriers of hemophilia. Blood 2006; 108: 52–6. doi: 10.1182/blood-2005-09-3879. PlugI Mauser-BunschotenEP Bröcker-VriendsAH Bleeding in carriers of hemophilia Blood 2006 108 52 6 10.1182/blood-2005-09-3879 16551972 Open DOISearch in Google Scholar

Khair K, Mazzucconi MG, Parra R, et al. Pattern of bleeding in a large prospective cohort of haemophilia A patients: A three-year follow-up of the AHEAD (Advate in HaEmophilia A outcome Database) study. Haemophilia 2018; 24: 85–96. doi: 10.1111/hae.13361. KhairK MazzucconiMG ParraR Pattern of bleeding in a large prospective cohort of haemophilia A patients: A three-year follow-up of the AHEAD (Advate in HaEmophilia A outcome Database) study Haemophilia 2018 24 85 96 10.1111/hae.13361 29044825 Open DOISearch in Google Scholar

Renault NK, Howell RE, Robinson KS, Greer WL. Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care. Haemophilia 2011; 17: 237–45. doi: 10.1111/j.1365-2516.2010.02424.x. RenaultNK HowellRE RobinsonKS GreerWL Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care Haemophilia 2011 17 237 45 10.1111/j.1365-2516.2010.02424.x 21118331 Open DOISearch in Google Scholar

Arya S, Wilton P, Page D, et al. “Everything was blood when it comes to me”: Understanding the lived experiences of women with inherited bleeding disorders. J Thromb Haemost 2020; 18: 3211–3221. doi: 10.1111/jth.15102. AryaS WiltonP PageD “Everything was blood when it comes to me”: Understanding the lived experiences of women with inherited bleeding disorders J Thromb Haemost 2020 18 3211 3221 10.1111/jth.15102 32979008 Open DOISearch in Google Scholar

Arya S, Wilton P, Page D, et al. Healthcare provider perspectives on inequities in access to care for patients with inherited bleeding disorders. PLoS ONE 2020; 15(2): e0229099. doi: 10.1371/journal.pone.0229099. AryaS WiltonP PageD Healthcare provider perspectives on inequities in access to care for patients with inherited bleeding disorders PLoS ONE 2020 15 2 e0229099 10.1371/journal.pone.0229099 703270332078655 Open DOISearch in Google Scholar

von der Lippe C, Frich JC, Harris A, Solbrække KN. “It was a lot tougher than I thought it would be”. A qualitative study on the changing nature of being a hemophilia carrier. J Genet Couns 2017; 26: 1324–1332. doi: 10.1007/s10897-017-0112-9. von der LippeC FrichJC HarrisA SolbrækkeKN “It was a lot tougher than I thought it would be”. A qualitative study on the changing nature of being a hemophilia carrier J Genet Couns 2017 26 1324 1332 10.1007/s10897-017-0112-9 28547664 Open DOISearch in Google Scholar

Myrin-Westesson L, Baghaei F, Friberg F. The experience of being a female carrier of haemophilia and the mother of a haemophilic child. Haemophilia 2013; 19: 219–24. doi: 10.1111/hae.12026. Myrin-WestessonL BaghaeiF FribergF The experience of being a female carrier of haemophilia and the mother of a haemophilic child Haemophilia 2013 19 219 24 10.1111/hae.12026 23006036 Open DOISearch in Google Scholar

Kadir RA, Sabin CA, Goldman E, et al. Reproductive choices of women in families with haemophilia. Haemophilia 2000; 6: 33–40. doi: 10.1046/j.1365-2516.2000.00353.x. KadirRA SabinCA GoldmanE Reproductive choices of women in families with haemophilia Haemophilia 2000 6 33 40 10.1046/j.1365-2516.2000.00353.x 10632739 Open DOISearch in Google Scholar

van Galen, KPM, d’Oiron, R, James, P, et al. A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH. J Thromb Haemost 2021; 19: 1883–1887. doi: 10.1111/jth.15397. van GalenKPM d’OironR JamesP A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH J Thromb Haemost 2021 19 1883 1887 10.1111/jth.15397 836171334327828 Open DOISearch in Google Scholar

eISSN:
2055-3390
Sprache:
Englisch
Zeitrahmen der Veröffentlichung:
Volume Open
Fachgebiete der Zeitschrift:
Medizin, Vorklinische Medizin, Grundlagenmedizin, andere, Klinische Medizin, Pharmazie, Pharmakologie