Purple Canaries

Joyce Gould with Jill Gould

Rare Disease

Difficult Patient

I received my copy of “Difficult Patient” from Australia–$22.29 no shipping—honest! I immediately began reading, my yellow highlighter at the ready. I also grabbed some sticky pads to mark pages for quick reference. I am not one prone to weeping, but have to confess that within a short while, my face was unexpectedly wet with […]

PART 1: Beyond Purple Canary: How and why I disassociated myself from the American Porphyria Foundation and its collusive Porphryia Consortium

If you’ve read Purple Canary, you’ll remember that I first learned of the American Porphyria Foundation’s (APF) existence in 2008 when I’d turned to the Internet for information about a rare disease the pediatric neurologist we’d consulted had mentioned and ordered blood work for. Being American, I of course was immediately interested in APF listings, […]

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 […]