Purple Canaries

Joyce Gould with Jill Gould


National Porphyria Awareness Week, April 18-15, 2018

While telling me that her acute porphyria diagnosis, granted in her country of origin had just been revoked and the beneficial treatments she’d received there refused by the APF-connected US porphyria expert she’d approached for help, a desperately ill patient blurted out, “what they are doing to us is a porphyria holocaust!” At that, a Hitler quote (“Make the lie big, make it simple, keep saying it and eventually they will believe it”) slammed into my startled brain. It certainly wasn’t the first time I’d heard from an extremely ill patient that an acute porphyria diagnosis had been withheld or revoked by American Porphyria Foundation-connected operatives, but it was the first time I’d heard a holocaust analogy applied to what I and others knew to be a life-ruining problem for far too many people, their families and society as a whole.

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