Purple Canaries

Joyce Gould with Jill Gould

National Porphyria Awareness Week (NPAW)

NPAW (National Porphyria Awareness Week) Caregiver Commentary, Friday, April 12, 2019

Latent; clinically latent; completely latent; asymptomatic; completely asymptomatic; totally asymptomatic; clinically expressed; overt; manifest; biochemical and clinically manifest. Over the years, many terms such as these have been used by doctors/scientists to describe patients’ acute porphyria activity (most notably AIP which has long been the scientific “darling” of the acute porphyrias). In 1994, based on […]

NPAW (National Porphyria Awareness Week) Caregiver OpinionThursday, April 11, 2019

    If anyone has doubt about APF’s agenda to keep acute porphyria rare, here’s something from an 2018 Alnylam Pharmaceutical Earnings Call Transcript* in which an Alnylam executive assured a querying investor, “let me emphasize that porphyria will remain an ultra-rare disease…we’ve been working with the porphyria network to strengthen the next set of physicians….” Yup, […]

NPAW (National Porphyria Awareness Week), Tuesday, April 9, 2019

This NPAW, thought I’d share bits of history uncovered as I review, sort and file zillions (ok, not zillions, but a lot) of porphyria-related articles. Orange–hued urine…acute porphyria attacks associated with severe heme depletion in the liver…. U.S. Dr. Cecil J. Watson (1901-1983)’s medical fellowship was completed in the Munich laboratory of the world’s leading […]

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.” […]