Purple Canaries

Joyce Gould with Jill Gould

Analysis shows majority of “confirmed” acute porphyria patients diagnosed via “natural” excretion of darkened urine.

Hoping to distinguish the method of how “confirmed” acute porphyria diagnoses had determined, I recently analyzed 129 AIP, HCP and VP published cases. The results proved interesting:

  • 60% noted they were diagnosed based on urinary biochemical testing following “natural excretion” of darkened urine during attack.
  • 5% reported urinary biochemical testing of darkened urine following administration of “unsafe” (and unplanned) medication(s), prompting the diagnosis.
  • 4% recounted DNA/blood, urine, or spinal fluid samples resulted in diagnosis.
  • 31% did not disclose diagnostic methods. Note: some patients were diagnosed before the advent of biochemical testing.

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