Purple Canaries

Joyce Gould with Jill Gould

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Where is the documentation of the basic research done to support the outrageous diagnostic deviations from the Father of AIP (Waldenstrom’s and his colleagues’) era?

When it comes to AIP (and the other acute porphyrias), porphyria experts (particularly US) seem to have neglected basic research after Waldenström (1906-1996) and colleagues of that era’s findings had been established and documented. Why? For a disease that was identified 80+ years ago and has garnered the bulk of acute porphyria attention since then, […]

Acute Porphyria “Missed Diagnosis” Patients Speak Out

ACUTE PORPHYRIA PATIENT/CAREGIVER DISCUSSION PAPER An Open Letter/Response to Corresponding Authors: Jean-Charles Deybach, MD, PhD and Robert J. Desnick, PhD, MD From:   Joyce Gould, mother, caregiver and author of “Purple Canary” on behalf of black-listed, “a.p. missed diagnosis” acute porphyria patients/caregivers Re:       “International Porphyria Molecular Diagnostic Collaborative [IPMDC]: an evidence-based database of verified pathogenic and […]

Patient/Caregiver Discussion Paper: WILL US/EU PORPHYRIA EXPERTS MAKE A MOCKERY OF PRECISION MEDICINE AT ICPP? Exploited/Victimized Acute Porphyria Patients/Caregivers Still Concerned

As porphyria experts from around the world make their way to Milan’s 2019 International Congress of Porphryins & Porphyrias (ICPP), a group of acute porphyria patients/caregivers from various countries awaits the outcome of an ICPP roundtable session, “How to define acute attack of Porphyrias.”  The acute porphyrias are metabolic disorders that fall within the disease […]

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 […]

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 […]

Press Release 6/17/2017

FOR IMMEDIATE RELEASE June 1, 2017 STUCK IN DIAGNOSTIC QUAGMIRE, PATIENTS ROUTINELY ABANDONED BY RARE DISEASE SPECIALISTS ARE DENIED TREATMEMT – Caregivers Claim Situation is Problematic the World Over     PORTLAND, CT, USA – A long-simmering polarization in the acute porphyria community is coming to public light. On one side are patients who suffer […]