Abdul Mannan: The Iceberg Below the Surface in Von Willebrand Disease Care
Abdul Mannan, Consultant Hematologist at Betsi Cadwaladr University Health Board, shared a post on LinkedIn:
“We treat the bleeds. But do we treat the person?
Von Willebrand Disease affects ~1% of the population. That makes it the most common inherited bleeding disorder on the planet.
Yet most consultations focus on one thing: stopping the bleed.
Here’s what we’re missing:
- Iron depletion — ~45% of women with VWD are iron deficient. Not just anemic. Iron deficient. That means fatigue, brain fog and poor quality of life even when the Hb looks ‘fine’.
- Joint damage — Hemarthrosis occurs in 10-25% overall, more in Type 3. Pain, reduced mobility and long-term arthropathy that nobody asked about.
- Bone health — Data suggest higher fracture risk and osteoporosis in VWD cohorts. The VWF-osteoprotegerin (OPG)-RANKL axis maybe involved.
- Mental health — Depression and anxiety are reported more in adolescents with heavy menstrual bleeding. Many women report sexual restrictions. Relationships suffer.
- Reproductive health — Endometriosis, endometrial hyperplasia, miscarriage. These are not ‘extras’. They are part of the disease.
- Socioeconomic cost — Missed school. Missed work. Lower educational attainment.
Caregiving burden falling disproportionately on women.
VWD care is not just stopping bleeds.
It’s preventing iron depletion, pain, disability, mood problems and life disruption.
Next time you see a patient with VWD, ask them:
How’s your energy? Your joints? Your mood? Your periods? Your work?
You might be surprised by the answers.
Because the iceberg below the surface is bigger than the bleed you can see.”
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