Purple Canaries

Joyce Gould with Jill Gould

Expert Denial Continues: Fear-ridden, Frustrated, Forgotten and Fed-up paper released

Hoping to direct worldwide attention to a long-simmering polarization involving acute porphyria presentation, I recently released FEAR-RIDDEN, FRUSTRATED, FORGOTTEN and FED-UP: Patients with Atypical Acute Porphyria Presentation Stuck in Urinary Diagnostic Quagmire [FFFF].Written from a caregiver/patient perspective, the paper provides plenty of thoughts to ponder about the experts’ insistence that excessive urinary PBG excretion during attacks is required in order to be granted a diagnosis of acute porphyria. It addresses the issue of typical versus atypical acute porphyria presentation and in my opinion, every acute porphyric will gain knowledge by reading it. Over the past few weeks, FFFF was emailed to targeted individuals across the US and around the world, often accompanied by a press release featuring illustrations by talented caregiver Lila Meyer. Preliminary results have been promising but more needs to be done. So I am encouraging porphyria patients to print it out for (or forward it via email to) their own medical providers, relatives and anyone else who “just doesn’t get it.” Contact me via Facebook (Joyce Gould) or (Purple Canary), email (goulds221@comcast.net) or blog (www.purplecanaries.com) if you are interested in receiving the FFFF paper or if you’d like me to send it to specific media, medical or other contact you feel should have it.




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