Anesa Mulabecirovic: Why Von Willebrand Disease Takes Years to Diagnose in Women
Anesa Mulabecirovic, Portfolio Manager at DNB Asset Management, shared a post on LinkedIn:
“The most common inherited bleeding disorder takes an average of sixteen years to diagnose in women.
Not because it is rare. It is not. The delay is about where the bleeding gets recorded.
A girl can bleed heavily from her first period, and the note that follows reads ‘heavy periods,’ not ‘possible clotting defect.’
She is routed to gynecology, not hematology. The symptom is counted. The disorder behind it is not.
Global registries identify von Willebrand disease in roughly 26 people per million.
Clinically significant disease runs closer to 1 in 1000.
Either way the treated population is a fraction of the real one, and the gap is a recording problem, not a biology one.
A market can only price what has a label.
The clinic meets the patient before the label exists, and that gap is larger than the numbers suggest.”
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