Purple Canaries

Joyce Gould with Jill Gould

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 intensities which can sometimes become life-threatening.

 

Technically speaking, the term porphyria derives from the Greek word for purple so appropriated because the urine of many porphyrics can sometimes be purple-hued. And since porphyrics can be extraordinarily susceptible to seemingly harmless triggers, I have compared them to canaries once used in coal mines to alert hazardous conditions.

 

Had it not been for government-approved, “safe” chemicals used throughout our local public school system and myriad “safe” medications prescribed to eleven year old Jill, this book might not have come about. These triggers, unrecognized at first, launched the mother/daughter journey that is sure to resonate not only with purple canaries, but anyone who contends with the social and psychological effects associated with chronic illness – including isolation and, for lack of a better word, bullying.

 

 

  


4 comments

  1. Kat

    I’m so thankful for you . Fight the good fight . Fed up with the pbg bull crap and HCP porphyria…I’ve been left to die a slow painful death .

    • goulds

      You are such an amazingly beautiful person. And you are right–you’ve been left to die a slow painful death. Fighting with everything we (I don’t do this alone) have, that’s for sure. Hope you can all participate soon!

  2. Kat

    Can someone sponsor a book for me . Super poor ..waiting on disability to kick in …had an attack in front of the disability judge …probably the only reason I was approved .

    • goulds

      What do you mean by sponsor a book for me? I’m so sorry for all that you are going through–it is completely inhumane!!!

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