Purple Canaries

Joyce Gould with Jill Gould

Porphyria Awareness Week – Tuesday, April 24, 2018

Well, well, well. Seems something has gotten under the skin of some porph ivory tower dwellers and hangers-on. Mama Canary doesn’t kowtow to manipulative gaslighting—and knows what she reads. Methinks this individual and her followers need to review what “she” herself wrote in her 2014 memoir —and what she wrote nine years later. To clear up a few things: I know full well that back in the day, porphyria was unlikely to be a blip on any differential diagnosis list and biochemical testing was not used routinely—until after APF was established (that’s fodder for future post). If I said “she” “had negative test results for ten years before [“she”] was diagnosed,” it would have been in the context of relating to the vast majority of “misdiagnosed” acute porphyria patients’ diagnostic odysseys.

I’ll start with the memoir—as “she” says, straight from the source. “She” is the one who opened her book with the statement, “I was only seventeen when I suffered my first attack of Porphyria.” (pg2) Understandably, “she” had no knowledge of familial porphyria (another upcoming post)at that time. However, many of the undiagnosed/misdiagnosed people do have bio-family members with porphyria and/or DNA confirmation. Yet “she” proceeded to tell, or was complicit in telling, so many who are in the same position she had been in from age 17-27 (or as “she” says now, 18-28) that their attacks aren’t porphyria because their U-BP levels are not high enough during attack. Seriously?? Obviously “she” didn’t excrete U-BP—apparently not until after she’d become a mother and noticed “at times I voided strange looking dark urine” (pg 13). She did not disclose in her book if this “strange colored urine” was ever captured during her many forays to various doctors, or if it happened when she experienced attacks. However, she did note, “nothing could be done for me in light of the lack of biochemical indicators” (pg 11) so I suppose not, because docs/lab would likely have noticed the atypical nature of the urine and investigated it. Bottom line, it is assumed the APF index case had acute porphyria sans urinary biochemical proof (U-BP) for about 10 years.

She can credit “her” “mild seizure activity” (pg 19-20) for her 36+year AIP position. For that’s what lead to “her” ingesting a dose of Dilantin. And that lead to, “Fortuitously, the urine bag rapidly filled with what appeared to be…purple-red…urine. (pg22) Perhaps ‘she” can clarify when it was decided that in order to be diagnosed with porphyria, patients had to excrete excessive amounts of U-BP? And answer the question, did she or did she not have porphyria before she swallowed that Dilantin? According to her book, she learned, after that pre-Dilantin period (via blood tests) that bio-family members also carried the genetic defect, but that too is fodder for yet another post.

It’s going to be a long week of installments. The Purple Canary flock has lots to impart. We ask that you read—and make your own decisions.

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