Purple Canaries

Joyce Gould with Jill Gould

ACUTE PORPHYRIA (VP) PATIENT ODYSSEY 2/8/2021

PURPLE CANARY SEEKING CLARITY AMONG ACUTE PORPHYRIA CHAOS

Presents

AN ACUTE PORPHYRIA (VP) PATIENT ODYSSEY, February 8, 2021

            A woman was biochemically diagnosed some years ago with Variegate Porphyria (VP); that diagnosis was subsequently DNA-confirmed. She appropriately received hematin therapy which proved to be effective. The treatment held up for a while, then the manifest symptoms came roaring back with a vengeance. The patient once again sought to be treated with hematin. However, this time the wife and mother was not only refused treatment, her VP diagnosis was dismissed. Her cries for help were ignored and her hopes were dashed–not only by medical professionals but by gaslighting porphyria experts. She was needlessly left to suffer out-of-this-world physical, neurological and emotional symptoms associated with the acute porphyria on her own. Knowing that hematin had already proven to be safe and effective when her VP had initially been activated (and diagnosed), she was left to spend her time time languishing–hoping for a Christmas miracle, at least. That was not to be. Following is her account:

“The suffering is insane, no one knows what suffering with Porphyria is like I wouldn’t wish it on my very worst enemy. It’s lingering is endless, days of indescribable pain and loss of life. The eyes that I used to see life through have been replaced by eyes that hold great depths of grief and pain. The world around me looks different; I live in a different world. It feels like I am dying yet I am useless because I am not part of life so to speak. I can’t get the help I need and I was again turned away from hospital yesterday. Porphyria is a destroyer of everything you hold dear to you and it’s a ticking time bomb, it’s a 24/7 disease of pain and suffering that strips you of the very happiness and life you once knew. Where is the compassion for people who suffer from this disease and so many others, where is the medical help we pay hundreds of thousands of $$ for?? Is it fair that we suffer so much yet still have the guilt of being sick to carry, a HUGE cross on our shoulders! Is it fair that we hang on to our relationships with our loved ones because of what this illness does??? Does the sick person really have to carry this all plus the weight of the illness? This is part of the insanity…..No more sunshine, fun lunches with a glass of wine, many certain foods are a no go, any kind of drug is mostly a trigger, no garlic, sulphur-based foods and drugs, no stress, no exercise!!!!! No laughter, no life. I feel at the end of my life story and that’s a huge shame from someone who used to laugh so much, do triathlons, run kilometers in mountains, have so much zest for life. I was creative with boundless energy and with big beautiful dreams. God keeps me alive, my children, husband and all my friends here. I don’t know how I keep going but if I don’t have medical intervention soon I honestly don’t know how much more this body that has been pillaged by Porphyria can go on for.

I am so filled with anger actually rage and desperation that brings me to my knees every day. I haven’t stopped crying for three days I feel broken. God help us all with this devilish Disease Porphyria. It’s Christmas, I am devastated.”

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