Purple Canaries

Joyce Gould with Jill Gould

Porphyria Consortium

Great things can come in small packages.

As this very wearying year comes to an end and I find myself firmly ensconced in the 2017 holiday season, I realized that an inspiring gift had come via the Internet some weeks ago. Just words, it might seem an obscure, small thing to some, but to others, the 88 words meant someone got the […]

Porphyria – If Nothing Else, APF Message Inconsistencies Still Consistent

My days of accepting APF/Porphyria Consortium’s writings at face value ended in June 2014 when my daughter’s DNA diagnose was “revised” by APF SAB member Robert J. Desnick. Based on a conversation that her (new to the case) treating hematologist had with Dr. Desnick, AIP treatments were discontinued until her body produced urinary biochemical proof […]

FINAL: Beyond Purple Canary: How and why I disassociated myself from the American Porphyria Foundation and it collusive Porphyria Consortium

At Jill’s hematologist’s request, Dr. Tishler telephoned me to ask why I thought my daughter had AIP. I explained what had been happening for seven years—the symptoms; the hospitalizations; results of the 2008 DNA testing; the favorable response to D10 and Panhematin treatments and specific trigger identification/association with attacks. He did not appear to be […]

PART 2: Beyond Purple Canary: How and why I disassociated myself from the American Porphyria Foundation and its collusive Porphryia Consortium–and how I discovered that Jill and I weren’t (and had never been) alone after all.

By the time the city of Boston was in the bus’s rear view mirror, I’d come to the realization that Dr. Desnick never had any intention of talking to me and I suspected that Desiree know it, too. In fact, I was highly skeptical that he’d been in Boston at all, never mind at the […]

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, […]