Shadi Tabibian: Living With Unexplained Bleeding – Insights From the Vienna Bleeding Biobank
Shadi Tabibian, Deputy of research at Blood Diseases Research Centers in Iran University of Medical Sciences, shared on LinkedIn:
”Bleeding Disorder of Unknown Cause (BDUC) is not a reassuring diagnosis.
It is an honest one.
It means our best available tests run correctly, interpreted carefully, cannot identify the cause of a real, documented, clinically significant bleeding tendency.
- It affects 40–70% of everyone referred to a haemostasis specialist.
- It is more common than VWD.
- 69% are women ، most of them waiting years for someone to take their symptoms seriously.
- And when they reach the delivery room without a plan, 77% will haemorrhage.
The quality of life data from the Vienna Bleeding Biobank are not surprising once you understand this.
Mental health scores in BDUC patients: 43/100.
Lower than VWD patients. Lower than the general population.
Driven not only by the bleeding, but by years of being dismissed, discharged, and told that normal tests mean a normal life.
They do not.”
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