Purple Canaries

Joyce Gould with Jill Gould

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 […]

NPAW (National Porphyria Awareness Week) Caregiver Commentary, Friday, April 12, 2019

Latent; clinically latent; completely latent; asymptomatic; completely asymptomatic; totally asymptomatic; clinically expressed; overt; manifest; biochemical and clinically manifest. Over the years, many terms such as these have been used by doctors/scientists to describe patients’ acute porphyria activity (most notably AIP which has long been the scientific “darling” of the acute porphyrias). In 1994, based on […]

NPAW (National Porphyria Awareness Week) Caregiver OpinionThursday, April 11, 2019

    If anyone has doubt about APF’s agenda to keep acute porphyria rare, here’s something from an 2018 Alnylam Pharmaceutical Earnings Call Transcript* in which an Alnylam executive assured a querying investor, “let me emphasize that porphyria will remain an ultra-rare disease…we’ve been working with the porphyria network to strengthen the next set of physicians….” Yup, […]

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.” […]

Saturday, National Porphyria Awareness Week, 2019

 APRIL 6 – 13, 2019 NATIONAL PORPHYRIA AWARENESS WEEK Finally! An organization that understands… The New York State Rare Disease Alliance: A Place for Patients and Caregivers Who are the True Experts in Rare and Complex Disease Care This is why Closed Facebook Forums dedicated to Porphyria were established long ago and have continued to flourish […]

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 […]