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.
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http://dx.doi.org/10.3389/fmed.2024.1345496 | DOI Listing |
Acta Orthop Traumatol Turc
December 2024
Department of Orthopedics and Traumatology, Ege University School of Medicine, Izmir, Türkiye.
Objective: This study aimed to compare preoperative and postoperative measures in haemophiliacs who had simultaneous total hip and knee arthroplasties.
Methods: A retrospective database search identified five patients with severe factor 8 deficiencies who underwent simultaneous hip and knee joint replacement surgery between 2002-2018. Preoperative and postoperative evaluations included Harris Hip Score (HHS), Knee Society Score (KSS), Knee Injury and Osteoarthritis Outcome Score (KOOS), range of motion, flexion contracture (FC), Visual Analog Scale (VAS), hip-knee angle, and leg length discrepancy.
J Dent Sci
January 2025
Department of Dentistry, Hualien Tzu Chi Hospital, Buddhist Tzu Chi Medical Foundation, Hualien, Taiwan.
Ther Adv Hematol
January 2025
Sobi, Basel, Switzerland.
Background: More real-world data are needed to complement existing phase III studies on the efficacy and safety of recombinant factor IX Fc fusion protein (rFIXFc) in people with haemophilia B.
Objectives: We report final data from the B-SURE study, evaluating the real-world usage and effectiveness of rFIXFc in France.
Methods: Previously treated patients (all ages/severities) received on-demand or prophylactic rFIXFc during B-SURE.
Haemophilia
January 2025
Department of Orthopedics, The First Affiliated Hospital of Zhejiang Chinese Medical University, Hangzhou, China.
Background: Arthroplasty is the standard treatment for end-stage haemophilic knee arthritis; however, the choice between single knee arthroplasty (SKA) and bilateral knee arthroplasty (BKA) in a single operation remains controversial due to the risks specific to haemophiliacs.
Methods: Two independent researchers conducted searches across CNKI, CBM, Wanfang, PubMed, Cochrane Library, Embase, and Web of Science, with the last search performed on 15 October 2024. Study results include joint function, complication and various cost.
Haemophilia
January 2025
Medicine and Pathology, Georgetown University, Washington, District of Columbia, USA.
Introduction: Gene editing therapies offer the possibility of substantial improvement in treatment and quality of life for people with haemophilia (PWH) in a landscape of dynamic therapeutic advancement. Developing a common and understandable language to discuss gene editing will be essential to ensure these treatments can be deployed in a safe and effective manner with fully informed and shared decision-making between healthcare professionals (HCPs) and PWH. A lexicon explaining and clarifying key concepts is one potential tool to address these aims.
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