19/04/2025
17. aprīlī visā pasaulē tika atzīmēta Pasaules hemofīlijas diena.
Šī diena ir ļoti būtiska, lai pievērstu uzmanību cilvēkiem, kuri dzīvo ar iedzimtiem asins recēšanas traucējumiem, tostarp hemofīliju un Von Vilebranda slimību.
Tā nav tikai medicīniska diagnoze – tā ir ikdienas cīņa par dzīves kvalitāti, pieejamu ārstēšanu un izpratni sabiedrībā. Latvijā joprojām daudzi pacienti saskaras ar izaicinājumiem – gan informācijas trūkumu, gan ierobežotu piekļuvi inovatīvai terapijai.
Šī diena atgādina mums, cik svarīgi ir runāt par retajām slimībām, atbalstīt pacientus un viņu ģimenes, kā arī veidot saprotošāku, iekļaujošāku sabiedrību.
🩸 Is haemophilia (fe)male? It’s time to challenge the misconceptions and close the care gap.
Women and girls with haemophilia, as well as female haemophilia carriers, often face significant barriers in accessing the care they need, from a lack of recognition and delayed diagnoses to limited access to tailored treatment. Traditionally seen as “just carriers”, many women who inherit haemophilia genes experience real symptoms and have low factor levels.
Yet their experiences are often overlooked. Bleeding symptoms may not always correlate with factor levels and tend to present differently than in males, particularly through heavy menstrual bleeding, as well as emotional distress, which can deeply affect their quality of life.
🗣️ Our new EHC booklet explores these challenges in depth — from clinical realities and perceptions to much-needed advocacy and reform. It also shares Lisa’s story, a mother of a daughter with severe haemophilia A, and her journey into advocacy.
Thanks to recent changes in diagnostic criteria, haemophilia in females is finally being recognised more clearly, but there is still a long way to go. Raising awareness, improving diagnostic accuracy, and ensuring fair access to emerging treatments remain essential.
📣 The EHC is calling for:
✔️ An EU Strategy for Women’s Health that guarantees equitable healthcare for women with haemophilia
✔️ A comprehensive EU Plan on Rare Diseases that includes gender-sensitive approaches
✔️ Inclusion of women in clinical research, standardised care protocols, and improved education for healthcare professionals
Learn more in our new booklet 📘https://www.ehc.eu/wp-content/uploads/2025/04/EHC-Booklet-on-women-with-haemophilia-and-female-carriers-WHD-2025-1.pdf
