Purple Canaries

Joyce Gould with Jill Gould

UPB - Urinary biochemical proof

Porphyria Awareness Week – Tuesday, April 24, 2018

Well, well, well. Seems something has gotten under the skin of some porph ivory tower dwellers and hangers-on. Mama Canary doesn’t kowtow to manipulative gaslighting—and knows what she reads. Methinks this individual and her followers need to review what “she” herself wrote in her 2014 memoir —and what she wrote nine years later. To clear […]

REAL HEROES: THOSE WHO SUFFER WITH UNRECOGNIZED ACUTE PORPHYRIA

If anyone wants to learn about real heroes, all one has to do is tune into closed FB porphyria forums. Tossed aside because they haven’t achieved a “real” diagnosis (as Desiree Lyon Howe articulated during the March 1, 2017 FDA/APF meeting—evidentially to her, “real”  means confirmed by APF “experts”), these remarkably brave patients cope with […]

A telling story for all patients with atypical acute porphyria presentation.

If the illness doesn’t kill you, the medical bills just might. Look elsewhere for answers. For an eye- and mind-opening information (and review of a documented case history) , check out 2018 STILL FEAR-RIDDEN, FRUSTRATED, FORGOTTEN AND FED-UP: Patients with Atypical Acute Porphyria Presentation STILL Stuck in Urinary Diagnostic Quagmire