Wolfgang Miesbach: Greater Symptom Burden in Women with Bleeding Disorders – Insights from Irish Data
Wolfgang Miesbach, Professor of Medicine at Frankfurt University Hospital, shared a post on LinkedIn:
”Eye-opening session at EAHAD 2026 Dublin!
At the 19th Annual EAHAD Congress, Petra Elvinge delivered a compelling talk on ‘Adapting our haemophilia nursing roles to meet the needs of Women and Girls with Bleeding Disorders (WGBD)’:
- Subclinical joint damage on MRI detected in haemophilia carriers with FVIII >40% and no history of overt bleeding – ankles (92%), knees (100%), elbows (100%) affected
50% of carriers reported chronic joint pain vs. 3.3% of controls (p<0.001), and 26% joint swelling vs. 0% (p=0.002) – independent of baseline factor activity - BMI matters: carriers with BMI ≥25 kg/m² had significantly more haemarthroses vs. normal BMI (23% vs. 0%, p=0.037)
- 40% of VWD-JB patients developed arthropathy (HJHS ≥10) vs. 10% controls (p<0.01); 25% showed X-ray joint damage vs. 4% controls (p=0.01) – strongly associated with pain, radiological abnormalities and reduced social participation
- Sports participation in Type 3 VWD most limited – fear of bleeding, restricted walking ability, and daily activity limitations all cited as barriers
Irish unpublished data showed women with bleeding disorders report far higher rates of joint symptoms, epistaxis, gum bleeding, bruising, surgical bleeding, and heavy menstrual bleeding vs. women without bleeding disorders.
And then this patient voice stopped the room:
‘As a carrier, I feel we get ignored when it comes to symptoms of pain.’
4 key take-home messages:
- WGBD experience joint bleeds — including clinically silent, asymptomatic ones
- Joint bleeding significantly impairs physical function and quality of life
- Management remains suboptimal despite clear evidence
- Patient-centred, multidisciplinary care co-designed with WGBD is urgently needed
Nursing roles are evolving to meet these women where they are – with dedicated assessment, tailored treatment pathways, and above all, being heard.”
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