Purple Canaries

Joyce Gould with Jill Gould

Difficult Patient

I received my copy of “Difficult Patient” from Australia–$22.29 no shipping—honest! I immediately began reading, my yellow highlighter at the ready. I also grabbed some sticky pads to mark pages for quick reference. I am not one prone to weeping, but have to confess that within a short while, my face was unexpectedly wet with tears. They just slid out. While writing Purple Canary was cathartic to a point, I cried reading Difficult Patient because it was filled with similar memories of what Jill went (and still goes) through. I cried because I was reminded that there is so little joy but much pain and desperation in “porph-land.” And I cried because there are so many parallels between Purple Canary (child-onset AIP) and Difficult Patient (young adult-onset/adult HCP) and that the damn so-called experts the world over continue to circle the wagons and shoot at suffering atypical presentation porph patients who seek validation, vindication and redemption. While Sue Currie was subjected to horrific abuse by her own body and was thought (as so many porphs are) to be faking, drug seeking, mentally ill and /or manipulative, I cried with a bit of envy because her HCP presentation was “textbook” and she ultimately found a “maverick” doctor who championed her cause. But the tears also galvanized me—like a tenacious weed, I will fight for my daughter and the many, many atypical acute porph presenters like her that I’ve met since Purple Canary went into production whose cries for help are ignored, dismissed and denied assistance.

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