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Haemophilia is a bleeding disorder in which those affected suffer repeated spontaneous or trauma-induced bleeding episodes. Repeated bleeds can lead to joint damage and subsequent disabling arthropathy. For 40 years, clotting factor replacement as intravenous therapy has been administered either as prophylaxis or to treat bleeds [ 1 , 2 ]. The physical limitations and high degree of self-management skills needed, affect patients’ autonomy and eventually quality of life [ 3 , 4 ]. This and the subsequent advent of comprehensive care centres and has revolutionized

Nurses play a pivotal role in providing comprehensive care to people with haemophilia and related disorders and coordinating care with other members of the multidisciplinary team, both within hospitals, the community and the patient’s own homes. Clinical nurse specialists in haemophilia and related disorders are advanced practitioners with extensive clinical knowledge and expertise in this specialist field. Nurses use their clinical, communication and interpersonal skills to identify the needs of people with haemophilia and related disorders and to provide care

Woods TA Makris M SSC/ISTH classification of haemophilia A: can haemophilia center laboratories achieve the new criteria? J Thromb Haem 2004 2 271 4 10.1046/j.1538-7836.2003.00447.x 2 Mulder K, Llinas A. The target joint. Haemophilia 2004; 10 (Suppl 4): 152–6. doi: 10.1111/j.1365-2516.2004.00976.x . 15479389 Mulder K Llinas A The target joint Haemophilia 2004 10 Suppl 4 152 6 10.1111/j.1365-2516.2004.00976.x 3 Srivastava A, Santagostino E, Dougall A, et al. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia 2020; 26 (Suppl 6): 1–158. doi

From 11-15 May, 110 nurses representing at least 21 countries descended on Melbourne, Australia, for what is arguably the largest global conference for nurses caring for patients with bleeding disorders – the World Federation of Hemophilia’s (WFH’s) World Congress. Held every two years, this meeting attracts nurses from around the world who generally work in haemophilia treatment centres (HTCs) providing comprehensive, multidisciplinary care to patients and families with a variety of bleeding diatheses. This year’s congress was an overwhelming success. The WFH

Many female haemophilia carriers have low factor levels consistent with a mild or moderate bleeding tendency, and may experience significant bleeding episodes. For transgender people with haemophilia transitioning from female to male, this raises issues around their care both during and after transition. © Shutterstock The World Health Organization has identified three challenges to the health and wellbeing of transgender people (see Box 1 for terminology): lack of evidence on the determinants and status of their health; lack of understanding about transgender

Image: Against the backdrop of a complex healthcare system, an expert panel has taken WFH guidelines as the basis for recommending a standard of care for managing haemophilia in Egypt © Shutterstock The healthcare system in Egypt is quite complex, with a large number of public entities involved in management, financing and the provision of care [ 1 ]. The World Federation of Hemophilia (WFH) Guidelines for the Management of Hemophilia are widely recognised as a gold standard to guide and inform the comprehensive management of haemophilia [ 2 ]. The guidelines

daughters of men with haemophilia but may be the daughter of a carrier or a long line of carriers. The Merriam-Webster Dictionary [ 2 ] defines haemophilia as a “sex-linked hereditary blood defect that occurs almost exclusively in males and is characterized by delayed clotting of the blood and consequent difficulty in controlling hemorrhage even after minor injuries.” The emphasis remains on a severe, male condition. In The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress, Pemberton, a medical historian who worked with Dr Kenneth Brinkhous

trust in the prophylaxis has enabled Mum to worry less as she knows he has some protection. Visits to the hospital have lessened and Mum is more relaxed about the condition. References 1 Srivastava A, Brewer AK, Mauser-Bunschoten EP et al. Treatment Guidelines Working Group. The World Federation of Hemophilia. Guidelines for the management of hemophilia. Haemophilia 2013; 19: e1–14. 10.1111/hae.12074 Srivastava A Brewer AK Mauser-Bunschoten EP et al Treatment Guidelines Working Group. The World Federation of Hemophilia. Guidelines for the management of hemophilia

, provided the original work is properly cited. References 1 Angelini D, Konkle BA, Sood SL. Aging among persons with hemophilia: contemporary concerns. Semin Hematol 2016; 53(1): 35-9. 10.1053/j.seminhematol.2015.10.004 26805905 Angelini D Konkle BA Sood SL Aging among persons with hemophilia: contemporary concerns Semin Hematol 2016 53 1 35 9 2 Biere-Rafi S, Baarslag MA, Peters M, Kruip MJ, et al. Cardiovascular risk assessment in haemophilia patients. Thromb Haemost 2011; 105(2): 274-8. 10.1160/TH10-07-0460 21136012 Biere-Rafi S Baarslag MA Peters M Kruip MJ et al

There is a lack of evidence-based guidance on the prevention of bleeding during surgery in people with haemophilia due to the difficulties of carrying out appropriate trials in this setting and the scarcity of published reports [ 1 , 2 ] . Clinical experience has been embodied in local protocols for the administration of replacement clotting factor and monitoring trough levels and bleeding [ 3 ] . Here, we present a case study of a patient with severe haemophilia A with significant comorbidities, who underwent surgery to remove a large haematoma in which