Purple Canaries

Joyce Gould with Jill Gould

Acute Intermittent Porphyia

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 […]

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 […]