Purple Canaries

Joyce Gould with Jill Gould

FEAR-RIDDEN, FRUSTRATED, FORGOTTEN AND FED-UP

FEAR-RIDDEN, FRUSTRATED, FORGOTTEN and FED-UP: Patients with Atypical Acute Porphyria Presentation Stuck in Urinary Diagnostic Quagmire. Caregiver/patient perspective by parent/advocate/author of Purple Canary; ©J. Gould, 1st Quarter, 2017

 

Contents:

Introduction

Uroscopy

US AIP Presentation: Swedish vs. Atypical AIP Presentation

Low or Absent PBGs = No Treatment in US, UK, Australia and other countries

Diagnostic Lag Time: Latent/Asymptomatic AIP? Case 1, Case 2

The AIP Equation: 1) Genetics, 2) Blood, 2) Liver

Acute vs. Chronic Nature of AIP

AIP Urine: Darkened Color

AIP Urine: Biochemicals

Onerous Testing

Childhood AIP

US Statistics/AIP Rarity

Conclusion – featuring illustrations by Lila Meyer and patient quotes (anonymous)

Endnotes

 

Order your free copy by contacting Joyce Gould via Facebook, email goulds221@comcast.net or www.purplecanaries.com. Help turn the tide! Demand “experts’” response!


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