Purple Canaries

Joyce Gould with Jill Gould

Disease

Expert Denial Continues: Fear-ridden, Frustrated, Forgotten and Fed-up paper released

Hoping to direct worldwide attention to a long-simmering polarization involving acute porphyria presentation, I recently released FEAR-RIDDEN, FRUSTRATED, FORGOTTEN and FED-UP: Patients with Atypical Acute Porphyria Presentation Stuck in Urinary Diagnostic Quagmire [FFFF].Written from a caregiver/patient perspective, the paper provides plenty of thoughts to ponder about the experts’ insistence that excessive urinary PBG excretion during […]

Press Release 6/17/2017

FOR IMMEDIATE RELEASE June 1, 2017 STUCK IN DIAGNOSTIC QUAGMIRE, PATIENTS ROUTINELY ABANDONED BY RARE DISEASE SPECIALISTS ARE DENIED TREATMEMT – Caregivers Claim Situation is Problematic the World Over     PORTLAND, CT, USA – A long-simmering polarization in the acute porphyria community is coming to public light. On one side are patients who suffer […]

What is a Purple Canary?

  Purple Canaries are rare – it is said, there are fewer than 200,000 of them in the United States. My daughter Jill is one of them.    Jill and her fellow purple canaries have a metabolic disorder known as porphyria. Porphyrias can manifest with neurological (called “acute”) and/or skin (called “cutaneous”) presentations of varying […]