Purple Canaries

Joyce Gould with Jill Gould

Porphyria Experts Revoking Diagnoses

BONUS 2021 NAPW COMMENTARY: ***IMPORTANT PURPLE CANARY ALERT***

TO PATIENTS WHO ARE DESPERATELY AWAITING AN ACUTE PORPHYRIA DIAGNOSIS but haven’t “met the metrics” that is, haven’t excreted “required” urinary porphyrins/precursors, please, for your own safety and sanity, DON’T divulge your doctor(s) name and/or location to ANYONE in this or any other FB forum. Unscrupulous people have been floating among these forums for years. […]

ACUTE PORPHYRIA (VP) PATIENT ODYSSEY 2/8/2021

PURPLE CANARY SEEKING CLARITY AMONG ACUTE PORPHYRIA CHAOS Presents AN ACUTE PORPHYRIA (VP) PATIENT ODYSSEY, February 8, 2021             A woman was biochemically diagnosed some years ago with Variegate Porphyria (VP); that diagnosis was subsequently DNA-confirmed. She appropriately received hematin therapy which proved to be effective. The treatment held up for a while, then the […]