Purple Canaries

Joyce Gould with Jill Gould

NPAW – April 19, 2020

Continued from National Porphyria Awareness Week, April 18, 2020

How these rejected patients’ predicaments compare with the horrific enormity of Hitler’s era of lost souls and destroyed lives may not be readily fathomable but one must remember that individual relativity and contemporary times reign. These people’s lives have been medically, financially, emotionally and socially ruined by greedy, cruel and bullying schemers operating as U.S. porphyria experts who consider them as nothing more than speed bumps. Having been rejected because of something they have no control over, they are cleverly urged by these “experts” to continue seeking “what’s really wrong with you” before being set adrift, left without a diagnosis or treatment to fend for themselves. With medical credibility obliterated most return with broken-spirits to their local environs where it is not unusual for them to be written off by medical practitioners, family, friends, acquaintances and social contacts as attention- or drug-seeking—or more commonly, as mental cases. Few are able to maintain employment. Without a diagnosis or medical support, obtaining social services benefits is virtually impossible. Some end up in psychiatric facilities, others in jail or prison. Forced to endure hellish, mind-bending and body-breaking acute porphyria symptoms and attacks, a great many end up merely subsisting; social isolation becomes their norm.


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