Women with haemophilia: more than just carriers

Open access


It is said that men have haemophilia and women are carriers, affected or unaffected. The terminology used is significant. Why it is that men are described as ‘having’ haemophilia and women with haemophilia are described as affected carriers? After all the men ‘carry’ the gene just as the women do and pass it on to their daughters. Likewise many women have Factor IX or Factor VIII levels that, if they were a man, would be categorised as mild or even in some cases moderate or severe haemophilia. Yet haemophilia is widely viewed as a condition affecting men with women as the passive vehicle for its transmission from generation to generation. There are many issues for women that are affected by this choice of terminology. Among them are their ability to access healthcare and their acknowledgement within healthcare systems throughout the world. Are women with the same factor level as men viewed in the same manner by healthcare professionals and do they acknowledge their own bleeding disorder as being the same as their male counterparts? How many women are unaware of their own bleeding disorder because they have only been viewed as ‘carriers’? Research into these issues is limited. This paper explores the aspects that affect women with haemophilia, from the definition in its historical context, obtaining a diagnosis, psychosocial elements, access to treatment, changing attitudes and acknowledgements within both the medical community and the wider community.

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  • 1. Blackwell’s Dictionary of Nursing. Oxford: Blackwell Science Ltd 1994.

  • 2. Merriam Webster Dictionary Y2013Z. Available at: http://www.merriamXwebster.com/medical/haemophilia?show=0&t=1375010894Y accessed: 28 July 2013Z.

  • 3. Pemberton S. The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress. Baltimore: The Johns Hopkins University Press 2011.

  • 4. Resnik S. Blood Saga: Hemophilia AIDS and the Survival of a Community. Berkley: University of California Press 1999.

  • 5. White GC Rosendaal F Aledort LM et al. Definitions in haemophilia. International Society on Thrombosis and Haemostasis 2000. Available at: http://c.ymcdn.com/sites/www.isth.org/resource/group/d4a6f49aXf4ecX450fX9e0fX7be9f0c2ab2e/official_communications/defhem.pdfY accessed 26 August

  • 2013

  • 6. MauserXBunschoten EP. Symptomatic Carriers of Hemophilia. Montreal: World Federation of Hemophilia 2008. Available at: http://www1.wfh.org/publications/files/pdfX1202.pdfY accessed 11/8/13Z.

  • 7. Srivastava A Brewer AK MauserXBunschoten EP et al. Guidelines for the management of hemophilia. Haemophilia 2013; 19Y1Z: e1X47.

  • 8. Eckhardt CL van Velzen AS Peters M et al. Factor VIII gene YF8Z mutation and risk of inhibitor development in nonsevere hemophilia A. Blood 2013; 122: 1954X62.

  • 9. NHD User Manual. National Haemophilia Database 2013. Available at: https://nww.mdsas.nhs.uk/NHD/pages/NHDUserManual.pdfY accessed 16 August 2013Z.

  • 10. Soucie JM Evatt B Jackson D. Occurrence of Hemophilia in the United States. American Journal of Hematology 1998; 59: 288[294.

  • 11. Byams VR Kouides PA Kulkarni R et al. Surveillance of female patients with inherited bleeding disorders in United States Haemophilia Treatment Centres. Haemophilia 2011; 17 YSuppl.1Z: 6X13.

  • 12. Schulman S. Mild Haemophilia. Montreal: World Federation of Hemophilia 2006 revised 2012. Available at: http://www1.wfh.org/publications/files/pdfX1192.pdfY accessed: 6 July 2013Z.

  • 13. World Federation of Hemophilia. Carriers and Women with Hemophilia Montreal: World Federation of Hemophilia 2012.

  • 14. Stonebraker JS BoltonXMaggs PHB Soucie JM et al. A study of variations in the reported hemophilia B prevalence around the world. Haemophilia 2012; 18Y3Z: e91X4.

  • 15. Stonebraker JS BoltonXMaggs PHB Brooker M et al. A study of reported factor IX use around the world. Haemophilia 2011; 17Y3Z: 446X55.

  • 16. Kasper CK Lin JC. How many carriers are there? Haemophilia 2010; 16Y5Z: 842.

  • 17. Winikoff R Amesse C James C et al. Y2004Z The role of haemophilia treatment centres in providing services to women with bleeding disorders. Haemophilia 2004; 10: 196X204.

  • 18. BoltonXMaggs PHB. Optimal haemophilia care versus the reality. British Journal of Haematology 2006; 132 Y6Z: 671X682.

  • 19. Skinner MW. WFH: Closing the global gap [ achieving optimal care. Haemophilia 2012; 18:1[12.

  • 20. Plug I MauserXBunschoten EP BrockerXVriends AHHT et al. R. Bleeding in carriers of hemophilia. Blood 2006; 106Y1Z: 52X56.

  • 21. Renault NK Howell RE Robinson KS et al. Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care. Haemophilia 2011; 17Y2Z: 237[245.

  • 22. Khair K Holland M Pollard D. The experience of girls and young women with inherited bleeding disorders. Haemophilia 2013; 19Y5Z: e276X81.

  • 23. James AH. More than menorrhagia: a review of the obstetric and gynaecological manifestation of bleeding disorders. Haemophilia 2005; 11: 295X307.

  • 24. Chi C Lee CA Shiltagh N et al. Pregnancy in carriers of haemophilia. Haemophilia 2007; 14: 56X64.

  • 25. Ebrahim SH Kulkarni R Parker C Atrash HK. Blood disorders among women: Implications for preconception care. American Journal of Preventive Medicine 2010; 38: S459XS467.

  • 26. Franchini M Favaloro EJ Lippi G. Mild hemophilia A. Journal of Thrombosis and Haemostasis 2010; 8: 421[432.

  • 27. Peerlinck K Jacquemin M. Mild haemophilia: a disease with many faces and many unexpected pitfalls. Haemophilia 2010; 16 YSuppl. 5Z: 100[106.

  • 28. Cassis FRMY Querol F Forsyth A Iorio A. Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia 2012; 18: e101Xe114.

  • 29. Jutel AG. Putting a Name to It: Diagnosis in Contemporary Society. Baltimore; Johns Hopkins University Press 2011.

  • 30. Haemophilia Society. Women Bleed too UK Haemophilia Society YNo DateZ For carriers of haemophilia with bleeding symptoms.

  • 31. NHF. Victory for Women with Blood Disorders. National Hemophilia Foundation 2006. Available at: http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=339&contentid=1564&rptname=womenY accessed 18/8/2013Z.

  • 32. Association Francaise des Hemophiles 2012. Les femmes et l’hemophilie. Available at: http://www.afh.asso.fr/spip.php?article222Y accessed 18/8/2013Z.

  • 33. WFH. Definitions and terminology. Montreal; World Federation of Hemophilia 2012. Available at: http://www.wfh.org/en/abd/carrier/carriersXdefinitionsXandXterminologyXenY accessed 11/8/13Z.

  • 34. Koerper MA. Time to End a SexXBased ‘Truism’. Hemaware YSummerZ 2012. Available at: http://www.hemaware.org/story/timeXendXsexXbasedXtruismY accessed: 3 August 2014Z.

  • 35. Aldridge S. The Carrier Barrier. Hemaware YSummerZ 2012. Available at: http://www.hemaware.org/story/carrierXbarrierY accessed: 3 August 2013Z.

  • 36. Evatt BL. The tragic history of AIDS in the hemophilia population 1982X1984. Journal of Thrombosis and Haemostasis 2006; 4Y11Z: 2295X2301.

  • 37. Mannucci PM. Desmopressin YDDAVPZ in the treatment of bleeding disorders: the first 20 years. Blood 1997; 90Y7Z: 2515X2521.

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