Purple Canaries

Joyce Gould with Jill Gould

U-PBG

NPAW (National Porphyria Awareness Week), Tuesday, April 9, 2019

This NPAW, thought I’d share bits of history uncovered as I review, sort and file zillions (ok, not zillions, but a lot) of porphyria-related articles. Orange–hued urine…acute porphyria attacks associated with severe heme depletion in the liver…. U.S. Dr. Cecil J. Watson (1901-1983)’s medical fellowship was completed in the Munich laboratory of the world’s leading […]

Monday, National Porphyria Awareness Week April 8, 2019

Acute porphyria is… “horrible.” “excruciating, mind-bending pain, and more pain, vomiting, heart racing like crazy, not being able to breathe, brutal—just brutal.” “being treated like or talked to like you’re a hypochondriac, a junkie or mentally ill.” “doctors acting like I’m crazy.” “being told over and over that ‘everything’ is normal—but I know it isn’t.” […]

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    

Great things can come in small packages.

As this very wearying year comes to an end and I find myself firmly ensconced in the 2017 holiday season, I realized that an inspiring gift had come via the Internet some weeks ago. Just words, it might seem an obscure, small thing to some, but to others, the 88 words meant someone got the […]

The eye sees only what the mind can comprehend. – Henri Bergston

I know I’m not alone in thinking it highly inappropriate that the apf coalesced around an AIP index case who did not produce holy grail darkened urine “naturally” and then joined forces with a group to set the bar for diagnosing ALL acute porphyrias based on excretion levels of of U-PBG (which, as it turns out, […]