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血友病中的性别平等:医疗保健、家庭及社会倡导的必要性。

Gender equity in hemophilia: need for healthcare, familial, and societal advocacy.

作者信息

Gualtierotti Roberta, Garagiola Isabella, Mortarino Mimosa, Spena Silvia, Romero-Lux Olivia, Peyvandi Flora

机构信息

Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre, Milan, Italy.

Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy.

出版信息

Front Med (Lausanne). 2024 Apr 5;11:1345496. doi: 10.3389/fmed.2024.1345496. eCollection 2024.

Abstract

Hemophilia is a rare bleeding disorder caused by a genetic defect on chromosome X. It is inherited as an X-linked trait, and hence, it is more frequently diagnosed in males, whereas women have been traditionally considered only as carriers of the disease. However, the role of women in families of patients with hemophilia is pivotal. As mothers, sisters, daughters, and female partners of patients with hemophilia, they play a central role in the management of the patient, considering healthcare, social, and familial aspects, but they might be affected by the disease as well, particularly in regions where consanguinity is frequent. This paper aims to explore the involvement of women in hemophilia, including their carrier status, bleeding symptoms, treatment challenges, and psychosocial impact not only related to male patients, but also as patients affected with hemophilia themselves. We advocate health equity, equal access to healthcare for men and women with hemophilia and dedicated resources to improve the unique needs of the women dealing with hemophilia, ultimately leading to improved care and quality of life.

摘要

血友病是一种由X染色体上的基因缺陷引起的罕见出血性疾病。它作为一种X连锁性状遗传,因此在男性中更常被诊断出来,而传统上女性仅被视为该疾病的携带者。然而,女性在血友病患者家庭中起着关键作用。作为血友病患者的母亲、姐妹、女儿和女性伴侣,她们在患者的管理中发挥着核心作用,兼顾医疗、社会和家庭等方面,但她们也可能受到该疾病的影响,尤其是在近亲结婚频繁的地区。本文旨在探讨女性在血友病中的参与情况,包括她们的携带者状态、出血症状、治疗挑战以及不仅与男性患者相关,而且作为自身受血友病影响的患者所面临的心理社会影响。我们倡导健康公平,为患有血友病的男性和女性提供平等的医疗保健机会,并提供专门资源以满足应对血友病的女性的独特需求,最终改善护理和生活质量。

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Challenges facing women and girls with bleeding disorders.患有出血性疾病的妇女和女童面临的挑战。
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Sexual activity and the adolescent with haemophilia.青少年血友病患者的性行为。
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