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Table 3 Summary of patient-reported description of attack symptoms during the interviews

From: Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

Type of symptoms Patients mentioning symptoms (n = 10) (%) Patient-reported symptom descriptions
Pain 100 Abdominal pain
Stomach pain
Psychiatric symptoms/ mental status changes 70 Confusion and memory problems
Psychotic episodes (hallucinations and self-harm)
Digestive system 70 Nausea and vomiting
Bowel symptoms
Diarrhea and constipation
Loss of appetite
Paralysis and muscle weakness 60 Onset of long-term paralysis
Muscle weakness
Loss of sensation in lower limbs
Other symptoms 70 Collapsing (including ‘fits’, ‘passing out’, and ‘seizures’) and dizziness
‘Flu-like’ symptoms, such as joint stiffness, joint pain, coughing, and sweating
Dark urine
  1. Note: aIt was unclear according to the patient if this was a symptom caused by an acute attack or by another cause