Wolfgang Miesbach: Highlighting a Critical and Overlooked Dimension of Rare Bleeding Disorders in Women at EAHAD 2026
Wolfgang Miesbach, Professor of Medicine at Frankfurt University Hospital, shared a post on LinkedIn:
”Rare Bleeding Disorders in Women — Still Underdiagnosed, Still Undertreated.
An excellent presentation by Saskia Schols at this year’s EAHAD congress highlighted a critical and often overlooked dimension of Rare Bleeding Disorders (RBDs): the disproportionate burden on women and girls.
Bleeding phenotype across RBDs
From fibrinogen disorders to FVII, FX, FXI and FXIII deficiency, the most common symptoms include mucocutaneous bleeding, epistaxis, postoperative bleeding — and consistently: heavy menstrual bleeding (HMB) and postpartum haemorrhage (PPH).
Even mild fibrinogen disorders (hypofibrinogenemia, dysfibrinogenemia) carry a bleeding grade severity ≥1 in the majority of patients.
A diagnostic gap that cannot be ignored
- Median age at RBD diagnosis: 28 years — with a diagnostic delay of ~14 years from menarche
- Women/girls may have normal PT and APTT — standard tests miss the bleeding
- Approximately 80% required treatment; 30% absent from work/school >2×/year
Using the right bleeding assessment tool — ISTH BAT, EN-RBD BSS, or Bleeding Severity Score — for the right patient makes all the difference.
Women with RBDs deserve earlier diagnosis and tailored care.
Thank you Saskia for this important message!”
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