Maia Meier: Are Women With Bleeding Disorders Being Underdiagnosed?
Maia Meier, Clinical Exercise Physiologist at Maia Letitia Fitness, shared a post on LinkedIn:
“Earlier this week, EHC – European Haemophilia Consortium shared an important perspective on the diagnosis gap for women with bleeding disorders – and why it matters.
Is the diagnosis gap accidental?
No – and it has a history.
For decades, haemophilia was understood as a condition affecting men only.
Women were labelled ‘carriers’ – relevant to family history, but not patients in their own right.
That framing shaped medical education, clinical pathways, and treatment centres.
Its effects are still felt today.
1 in 5 women who see a gynaecologist for heavy menstrual bleeding have a bleeding disorder – yet many remain underdiagnosed, because the question is often never asked.
The barriers are well known:
- Symptoms are normalised
- Family history is often missed
- Testing isn’t guaranteed
- Awareness is inconsistent across specialities
Change is happening – slowly.
In 2021, the ISTH updated classification, recognising women based on their own bleeding history – not just the label of ‘carrier.’
Long overdue.
When women are identified and followed, 94% of pregnancies can be managed with known carrier status before conception.
That outcome is possible – it’s just not yet the norm.
In June, I climb Mont Blanc – the first step in a journey across all seven summits, using each climb as a platform to raise awareness for earlier diagnosis and better care.
In partnership with EHC – European Haemophilia Consortium , we’ll be sharing stories and perspectives from across Europe.
Follow, donate and learn more on Project Elevate Her.
Data and insights in collaboration with European Haemophilia Consortium.”
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