Purple Canaries

Joyce Gould with Jill Gould

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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 […]