Purple Canaries

Joyce Gould with Jill Gould

Monday, National Porphyria Awareness Week April 8, 2019

Acute porphyria is… “horrible.” “excruciating, mind-bending pain, and more pain, vomiting, heart racing like crazy, not being able to breathe, brutal—just brutal.” “being treated like or talked to like you’re a hypochondriac, a junkie or mentally ill.” “doctors acting like I’m crazy.” “being told over and over that ‘everything’ is normal—but I know it isn’t.” “very isolating, very scary and very, very painful.” “not understood.” “losing friends, jobs, life, self.”

Acute porphyria is… “never being believed—by anyone.” “being treated with contempt by doctors, families.” “ERs, hospitalization, no answers, no help, no interest.” “seeing umpteen doctors who just don’t give a f-ck…don’t give a sh-t…don’t listen…don’t believe you…just don’t care.” “like being in a warped ‘Alice in Wonderland’ story.” “like wrangling unicorns.” “a life shredder.” “involuntary commitment to psyche wards—the worst.” “praying that the next attack won’t be my last—but will be the one when I finally pee pbgs.”According to a discerning Australian-based porphyria specialist, “Porphyria* is as bad as cancer.”

With the exception of the medical expert’s assertion, the foregoing metaphors were offered by people who suffer with acute porphyria, or caregivers who bear witness to the physical, neurological, emotional, financial and societal degradations that accompany acute porphyria manifestations. While the first sequence of metaphors can be universally attributed to all acute porphyria patients, the second set reflects the more hopeless tone voiced by patients whose acute porphyria diagnoses have been withheld (directly or indirectly) or revoked (in the U.S.) by experts associated with the American Porphyria Foundation (APF).

Undoubtedly, APF is the dominant force in the U.S. porphyria arena. The non-profit is revered by most patients who receive an expert-authenticated acute porphyria diagnosis yet is reviled by those who fit virtually every aspect of the diagnostic mold except one—they don’t excreted massive amounts of certain biochemicals (U-BP) during porphyria attacks. (Or as some allege, APF experts “moved the goalposts” over the years.) The second paragraph of metaphors reflects the more grave responses by devastated patients who were/are summarily discounted, dismissed and left to their own devices by the U.S. “porphyria patient-advocacy and physician-education” organization—because they don’t “pee pbgs.” This group of hapless patients is ever-expanding and was dubbed “Misfit Porphs” by an intrepid individual who herself was burned APF et al’s inhumane treatment.

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