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Manchester mother struggles with social isolation from rare 'fish odour' disorder

Misdiagnosed as having a mental health issue, she relies on strict dietary control to manage trimethylaminuria

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Overview

  • Trimethylaminuria is caused by an FM03 gene mutation that prevents the breakdown of trimethylamine, resulting in a pungent fish-like smell from breath, sweat and urine.
  • Symptoms first appeared at age 18, leading Davies to miss family events, including her cousin’s funeral, and to withdraw from employment opportunities.
  • Her concerns were initially dismissed as psychological before she obtained a formal TMAU diagnosis in June 2023.
  • Metabolic Support UK records only about 100 diagnosed TMAU cases in the UK, indicating the condition may often go unrecognised.
  • She manages daily life by following a strict low-choline diet that excludes fish, eggs, red meat and processed foods, though strict dietary limits can be challenging.