Purple Canaries

Joyce Gould with Jill Gould


If anyone wants to learn about real heroes, all one has to do is tune into closed FB porphyria forums. Tossed aside because they haven’t achieved a “real” diagnosis (as Desiree Lyon Howe articulated during the March 1, 2017 FDA/APF meeting—evidentially to her, “real”  means confirmed by APF “experts”), these remarkably brave patients cope with the same challenges (debilitating symptoms but no biochemical proof) Desiree Lyon Howe was freed from at about age 27. That’s when she swallowed a Dilantin tablet (capsule?) prescribed by an unsuspecting doctor that induced a life-threatening attack which produced purple-hued urine and voila—the diagnosis of AIP which ultimately led to the establishment of the APF. One has to wonder how (or if) she would be faring today had that Dilantin never materialized and she had been left ad infinitum with symptoms as participants of these forums are. Excepting, of course, the APF members who are encouraged to “help spread the cause” by bringing these “poor souls” into the APF “light” so troll these closed forums, if not for that purpose, then to report back to the mother ship and/or bully closed forum administrators about “unfair” posts. To the real heroes on this and other closed forums, please know that your life and experiences do matter—and someday (soon, I hope) your voice will matter too. In the meantime, perhaps this article, written by another hero, Ellen Smith who suffers not with porphyria but with Ehlers-Danlos Syndrome and Sarcoidosis that may help sustain and support you through this day. http://nationalpainreport.com/living-my-new-normal-life-with-chronic-pain-that-i-dont-want-defining-me-8835779.html [Special thanks to Barbara Bradbury Wilcox for leading me to the National Pain Report forum.]

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