Research and practice in thrombosis and haemostasis · 2026
Dealing with heavy menstrual bleeding in very rare bleeding disorders: from a patient's perspective.
Редакционная статьяНазвание и аннотация: Перевод пока не подготовлен
Обработка статьи · этапы, ошибки и управление
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Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Raheja Priyanka, Abdul-Kadir Rezan, Søndergaard Knudsen Maja Johanne, Burgess Christina, Schols Saskia E M, Very Rare Coagulation Factor Deficiency Working Group and Women and Girls with Bleeding Disorders Working Group of European Association for Haemophilia and Allied Disorders (EAHAD)
Аннотация
Data on heavy menstrual bleeding in women with very rare bleeding disorders, such as very rare coagulation factor deficiencies or severe inherited platelet disorders, are scarce. Heavy menstrual bleeding is a common health problem in premenopausal women, causing both physical and psychosocial challenges. For women with very rare bleeding disorders, these challenges are unimaginably overwhelming, from hurdles during the diagnostic trajectory, facing regular monthly blood loss, to finding recognition of their unique position in life. Providing these women with a platform to share their life stories with their own true perspectives will increase awareness of this global health problem. In this opinion paper, we report the personal stories of 3 women living with very rare bleeding disorders and provide a future perspective on improving the quality of life for this population.