Purple Canaries

Joyce Gould with Jill Gould

Hurray! Purple Canary welcomes an acute porphyria cousin from the land down under!

I was recently made aware of a book written by Australian Sue Currie, who was diagnosed with HCP (Hereditary Coproporphyria). The ebook is titled, ““Difficult Patient,” and is available for purchase at https://www.amazon.com.au/Difficult-Patient-Sue-Currie-ebook/dp/B072VW4NG8. The Amazon page says, “Imagine having a life-threatening illness only for doctors to think you were faking it.” My daughter Jill and an as-yet not fully counted number of patients around the globe like her and Sue don’t have to imagine it because they live it every day of their lives. I cannot wait to read Sue’s book and am so excited that acute porphyria cases are being brought closer to the forefront of society. Porphyria experts will no longer be able to hide under their strongly woven basket much longer. Here, here, Sue Currie!


2 comments

  1. Barbara Bradbury

    Read Sue’s book in less than two days, though I have VP. THe commonalities amongst the acute porphyrias :AIP, VP, HCP, and the much neglected and even rarer ALAD (6-8 cases worldwide) insistently point to porphyria in general, despite great variation in PBG levels. In fact there is such wide variation in the measures, that they need revising in their entirety. THE very modern insistence on test results is pseudo science! In fact it has permeated the thinking of doctors to the exclusion of family history, their own observations and common sense. The pioneers in Sweden, Australia, South Africa and Japan and possibly most countries were interested in misdiagnosis right from the beginning. (see McEwin, 1973 especially concerning those sent to psychiatric hospitals; Dean, post WWII, especially his family reports; Bekerus, originally from Yugoslavia who did very comprehensive family trees in Chester, UK 1965/1998 and whose hypothesis about age and the menstrual cycle has been swallowed almost universally ever since.)
    JOyce’s hurt, justified anger and mystification

    • goulds

      You are a very astute and insightful miracle, Ms. BBW and I treasure your response here. While you and so many of your porph counterparts AROUND THE WORLD continue to struggle with chronic symptoms and acute attacks, the collusive pseudo experts continue to dance and sing out their venomous half-truths, mi-directions and even lies. I cannot wait to read Sue Currie’s story–and revel in the fact that this lovely lady had gumption (and rallied herself) to take the “bull by the horns” and places the shame where it belongs. I’ve witnessed how very hard it can be for porphyria patients to focus, to martial every last ounce of energy to read, to focus, to LIVE!

      Every single porphyria patient deserves the medical world’s and society’s utmost respect and assistance because as the South African/Aussie-relocated doctors told you–porphyria is as bad as cancer. L2U

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