Purple Canaries

Joyce Gould with Jill Gould

“Porphyria in Africa” article written in 1958 confirms Waldenstrom’s 1939 findings.

From the 1958 article “Porphyria in Africa” by A.G. Shaper, section titled “The Urine in Acute Intermittent Porphyria”: “To complicate matters, in a recent survey of 80 cases seen  at the Mayo Clinic it was noted that no porphobilinogen was found in nine cases with severe CNS involvement and in six cases with abdominal crisis…It should be emphasized that porphyrin excretions may be intermittent.”  Huh. Does this mean Mayo Clinc “forgot” it has this information–or disregards it to this day? I’m aware of several “undiagnosed” AIPers who will find this VERY interesting–and perhaps support their suspicions questionable responses they received from that august entity.

1 comment

  1. Barbara Bradbury

    Good question Joyce, “did Mayo forget”- Looks as if there was a sudden surge of diagnoses after Watson’s index case and his new test. History is so important, as Freud kept pointing out. He put personal and family history in the forefront, individualising what has been kept alive by the “chosen” all along. But history seems to have been left out of the mindset of the organisation that boasts of it global priority, while those who were in the forefront in the first place, keep working away, except where they have had the carpet pulled.

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