Purple Canaries

Joyce Gould with Jill Gould

2021 National Porphyria Awareness Week

BONUS 2021 NAPW COMMENTARY: ***IMPORTANT PURPLE CANARY ALERT***

TO PATIENTS WHO ARE DESPERATELY AWAITING AN ACUTE PORPHYRIA DIAGNOSIS but haven’t “met the metrics” that is, haven’t excreted “required” urinary porphyrins/precursors, please, for your own safety and sanity, DON’T divulge your doctor(s) name and/or location to ANYONE in this or any other FB forum. Unscrupulous people have been floating among these forums for years. […]

DAY 6 – 2021 NATIONAL PORPHYRIA AWARENESS WEEK: An AIP PATIENT ODYSSEY

Please note the author/patient posted his odyssey on a FB forum a couple of years ago. He agreed to participate in this Purple Canary NPAW compendium in hopes that the information and his experience might help other patients in managing their AIP. My first AIP attack occurred in late summer 1956 at age nine. To […]

Day 3, Purple Canary 2021 National Porphyria Awareness Week Commentary

In a perfect world, every acute porphyria patient would be identified, receive adequate and effective treatment as necessary (high-ticket, budget-busting pharmaceutical orphan drugs need not be the only option(s))–and maybe have a chance at retaining his/her position as a contributing member of society, even if it means in a non-traditional sense. But of course, this […]

PORPHYRIA EXPERTS: FOR SOCIETIES’ SAKE…STOP DISMISSING, GASLIGHTING AND ABANDONING DESPERATELY ILL ACUTE POPHYRIA PATIENTS! Day 1, Purple Canary 2021 National Porphyria Awareness Week Commentary

“What we have here is a failure to communicate.” This classic line from the American film Cool Hand Luke exemplifies the alarming and capacious disparity between information provided by certain acute porphyria experts and what doctors and patients need to know in order to make informed medical decisions. For decades, these experts have (willfully, it […]