Purple Canaries

Joyce Gould with Jill Gould

Disease

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 […]

Expert Denial Continues: Fear-ridden, Frustrated, Forgotten and Fed-up paper released

Hoping to direct worldwide attention to a long-simmering polarization involving acute porphyria presentation, I recently released FEAR-RIDDEN, FRUSTRATED, FORGOTTEN and FED-UP: Patients with Atypical Acute Porphyria Presentation Stuck in Urinary Diagnostic Quagmire [FFFF].Written from a caregiver/patient perspective, the paper provides plenty of thoughts to ponder about the experts’ insistence that excessive urinary PBG excretion during […]

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 […]

What is a Purple Canary?

  Purple Canaries are rare – it is said, there are fewer than 200,000 of them in the United States. My daughter Jill is one of them.    Jill and her fellow purple canaries have a metabolic disorder known as porphyria. Porphyrias can manifest with neurological (called “acute”) and/or skin (called “cutaneous”) presentations of varying […]