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!


4 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

  2. Barbara Bradbury

    To quote exactly, “Porphyria is WORSE than cancer”. I soon realised this recently at my new haematologist consultation for all of ten minutes, a busy day for him, waiting room chocka block. I had been asked first to come in early, then later, ending up being the last patient of the morning, while he had a “procedure” at my original time. We had got up at dawn, 5am, to prepare, driven an hour, had lunch at 11.30 as a preventative to an attack, and sat, sat, sat. My former gentle haematologist use to see me for an hour. He’s gone to academia, where I hope he gives lectures on porphyria, as well as on oncology.
    The new man asked me why I did not go to the Sydney Porphyria Clinic. He got an earful of my fury about the neglect, the delayed diagnoses, the misinformation spread from America and taken up verbatim, (also spreading here) the turning away of many patients, wrong theories sprouted, tests done at the wrong time, patient records missing and former patients reluctant to return, when their GP’s obeyed expectations and protocol, to refer them back. etc. The new man did not have much of a chance to offer any help, but he repeated, “if it’s working, carry on” (his saving grace, as I noted in my mind, he must gave read the file”). My opening gambit was: “I’m getting worse but managing it better”. He looked puzzled at the paradox, but did not try to clarify with me. How could I get 400kms south to Sydney; I can hardly walk. Managing better means managing without the help of doctors.
    My GP who referred me to my interested haematologist, has also left. One possible replacement clearly had read nothing of my file before I arrived, and finally asked me, “What are the symptoms”? Fury blew inside me at this. Which of the hundreds, which body system of the multi system, all body disease that it is, could I have enumerated. I replied, “You’ll need a book”. “You must come in”, she said, “But I am mostly bedridden!” She repeated her demand. My mind’s eye pictured the hard Chinese Communist women giving orders.
    I concluded that the new man was being the devil’s advocate, to get to the bottom of the New South Wales dilemma. I referred to the medical journal article about me, and saw the recognition in his face, as he scrambled through my file. So he learnt some, only some of the history of porphyria in Australia, at some length and at a furious pace.
    Yes, he said he would write to my GP, who he said could also administer 50%/500gms glucose by infusion. This was already being done in Melbourne, though it’s the nurses in the practice who do it. So I concluded that at last those treating porphyrics here were at least and at last talking to one another, instead of relishing our rarity. As he must be seen to do something, I reasoned, he ordered liver tests, (which the GP had just had done ). Well, it stood to reason that if your main interest is oncology, you just might pick up liver cancer. He had at least read that, but ignored the other end stages:heart, kidney, respiratory, all failures, and whole body paralysis.
    Fury speaks truth, so my last words were: “You can’t help me, there’s no cure”. My heart was sinking with the realisation that cancer was real and could be made visible, mostly curable, that everyone was on the side of the cancer patient, we did not matter, it was only porphyria, unseeable nerve disease, could really only be inferred, so few of us. Even our appointments did not matter, procedures took precedence.
    Three weeks have gone by, without a letter to the GP

    • goulds

      Bravo–a beautiful summation of every porphyria patient’s dilemma–well, at least those whose severe symptoms are referred as “latent” by US colleagues of that bizarre American coup that fancies itself a patient-advocacy and physician-education organization that gratifies itself by “explaining facts about porphyria.” Problem is, as you and an increasing number of others know, the gall of the current American porphyria collegiality to stand united in saying, “We have several patients in the same situation with DNA but no attacks” is downright fantastical. Dissemination of selective “facts” does nothing but enrage the dozens, hundreds, perhaps thousands of patients with DNA proof and/or biological family members with porphyria the world over who suffer repeated attacks severe enough to end up in the hospital–but don’t generate urinary biochemical proof. It is only a matter of time. Our own network will stand united. Bless you on this Christmas evening!

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