Purple Canaries

Joyce Gould with Jill Gould

Purple Canary

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, […]