Purple Canaries

Joyce Gould with Jill Gould

Purple Canary – Author Review

First and foremost, Purple Canary exposes the simple truth that we all fear what we don’t understand. A story with few light moments, Purple Canary is a sobering chronicle about discerning, diagnosing and living with the rare metabolic disorder known as acute intermittent porphyria in a world where the condition is largely unrecognized and therefore, essentially unknown. Tenacious mom Joyce Gould describes months that evolved into years of attempting to seek support and acceptance from the medical arena and educational system for her daughter Jill, who, as a very sick pediatric patient, was unfairly subjected to questionable academic and medical ethics from within those professions. The book has been has been well-received by an important audience—porphyria patients and caregivers, yet has been snubbed by porphyria experts. A Kirkus Review noted, “This book offers a troubling account and its broadest contribution is how it highlights the difficulties that people with unusual problems face in the American public school and health care systems…[it] may be useful for families affected by porphyria and may interest others frustrated by flawed education and medical systems in the United States.” With little improvement having been made in that respect, Gould released a paper, “Fear-ridden, Frustrated, Forgotten and Fed-up, Patients with Atypical Acute Porphyria Presentation Stuck in Urinary Diagnostic Quagmire” because, sadly, the saga continues. Purple Canary is available at https://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Dstripbooks&field-keywords=Purple+Canary. Requests to receive the paper Fear-ridden, Frustrated, Forgotten and Fed-up: Patients with Atypical Acute Porphyria Presentation Stuck in Urinary Diagnostic Quagmire can be made on this blog or by contacting email goulds221@comcast.net, Joyce Gould on Facebook or Purple Canary on Facebook.Chiol

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