From the 1958 article “Porphyria in Africa” by A.G. Shaper, section titled “The Urine in Acute Intermittent Porphyria”: “To complicate matters, in a recent survey of 80 cases seen at the Mayo Clinic it was noted that no porphobilinogen was found in nine cases with severe CNS involvement and in six cases with abdominal crisis…It should […]
2018 is filled with promise. While I’ve not been super at keeping New Year’s resolutions in the past (and in fact, stopped making them years ago), I promise this New Year will contain revolutions of sorts. In fact, Purple Canary, The Girl Who Was Allergic to School: The True Story of How School Chemicals […]
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 […]
Sitting on your throne, royal down to the bone. Some say you deserve the Nobel Prize– a mirror reflection of their lies. You wear a crown with horns while we wear crowns of thorns. Too many are still fooled by your disguise: a perfect shape, perfect size, pretty little face with a nasty alibi. This […]
I know I’m not alone in thinking it highly inappropriate that the apf coalesced around an AIP index case who did not produce holy grail darkened urine “naturally” and then joined forces with a group to set the bar for diagnosing ALL acute porphyrias based on excretion levels of of U-PBG (which, as it turns out, […]
If there’s one thing that burns my biscuits and prompts me to shut that oven off it is knowing that some entity is being surreptitiously untruthful at another human being’s expense. To that end, my husband Ed and I recently exposed such deceit—by medical professionals no less. While they scramble to try (and I emphasis […]
Analysis shows majority of “confirmed” acute porphyria patients diagnosed via “natural” excretion of darkened urine.
Hoping to distinguish the method of how “confirmed” acute porphyria diagnoses had determined, I recently analyzed 129 AIP, HCP and VP published cases. The results proved interesting: 60% noted they were diagnosed based on urinary biochemical testing following “natural excretion” of darkened urine during attack. 5% reported urinary biochemical testing of darkened urine following administration […]
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 […]