Purple Canaries

Joyce Gould with Jill Gould

American Porphyria Foundation

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    

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 […]

A Tribute

Sitting on your throne, royal down to the bone. Some say you deserve the Nobel Prize– a mirror reflection of their lies. You wear a crown with horns while we wear crowns of thorns. Too many are still fooled by your disguise: a perfect shape, perfect size, pretty little face with a nasty alibi. This […]

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, […]

Misleading? Burn my biscuits!

If there’s one thing that burns my biscuits and prompts me to shut that oven off it is knowing that some entity is being surreptitiously untruthful at another human being’s expense. To that end, my husband Ed and I recently exposed such deceit—by medical professionals no less. While they scramble to try (and I emphasis […]

Porphyria – If Nothing Else, APF Message Inconsistencies Still Consistent

My days of accepting APF/Porphyria Consortium’s writings at face value ended in June 2014 when my daughter’s DNA diagnose was “revised” by APF SAB member Robert J. Desnick. Based on a conversation that her (new to the case) treating hematologist had with Dr. Desnick, AIP treatments were discontinued until her body produced urinary biochemical proof […]