Purple Canaries

Joyce Gould with Jill Gould

Disease

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 […]

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 […]

FINAL: Beyond Purple Canary: How and why I disassociated myself from the American Porphyria Foundation and it collusive Porphyria Consortium

At Jill’s hematologist’s request, Dr. Tishler telephoned me to ask why I thought my daughter had AIP. I explained what had been happening for seven years—the symptoms; the hospitalizations; results of the 2008 DNA testing; the favorable response to D10 and Panhematin treatments and specific trigger identification/association with attacks. He did not appear to be […]

PART 2: Beyond Purple Canary: How and why I disassociated myself from the American Porphyria Foundation and its collusive Porphryia Consortium–and how I discovered that Jill and I weren’t (and had never been) alone after all.

By the time the city of Boston was in the bus’s rear view mirror, I’d come to the realization that Dr. Desnick never had any intention of talking to me and I suspected that Desiree know it, too. In fact, I was highly skeptical that he’d been in Boston at all, never mind at the […]

Purple Canary – Author Review

First and foremost, Purple Canary exposes the simple truth that we all fear what we don’t understand. A story with few light moments, Purple Canary is a sobering chronicle about discerning, diagnosing and living with the rare metabolic disorder known as acute intermittent porphyria in a world where the condition is largely unrecognized and therefore, […]

Hurray! Purple Canary welcomes an acute porphyria cousin from the land down under!

I was recently made aware of a book written by Australian Sue Currie, who was diagnosed with HCP (Hereditary Coproporphyria). The ebook is titled, ““Difficult Patient,” and is available for purchase at https://www.amazon.com.au/Difficult-Patient-Sue-Currie-ebook/dp/B072VW4NG8. The Amazon page says, “Imagine having a life-threatening illness only for doctors to think you were faking it.” My daughter Jill and […]

FEAR-RIDDEN, FRUSTRATED, FORGOTTEN AND FED-UP

FEAR-RIDDEN, FRUSTRATED, FORGOTTEN and FED-UP: Patients with Atypical Acute Porphyria Presentation Stuck in Urinary Diagnostic Quagmire. Caregiver/patient perspective by parent/advocate/author of Purple Canary; ©J. Gould, 1st Quarter, 2017   Contents: Introduction Uroscopy US AIP Presentation: Swedish vs. Atypical AIP Presentation Low or Absent PBGs = No Treatment in US, UK, Australia and other countries Diagnostic […]