This NPAW, thought I’d share bits of history uncovered as I review, sort and file zillions (ok, not zillions, but a lot) of porphyria-related articles. Orange–hued urine…acute porphyria attacks associated with severe heme depletion in the liver…. U.S. Dr. Cecil J. Watson (1901-1983)’s medical fellowship was completed in the Munich laboratory of the world’s leading […]
If the illness doesn’t kill you, the medical bills just might. Look elsewhere for answers. For an eye- and mind-opening information (and review of a documented case history) , check out 2018 STILL FEAR-RIDDEN, FRUSTRATED, FORGOTTEN AND FED-UP: Patients with Atypical Acute Porphyria Presentation STILL Stuck in Urinary Diagnostic Quagmire
Validation!! Enzyme assay necessary to confirm AIP diagnosis w/without US expert “Holy Grail” urinary output.
It is Rare Disease Week on Capitol Hill (2/25-3/1/2018) and I have some great news to share. In the midst of writing my 2018 FFFF white paper (this year titled STILL FEAR-RIDDEN, FRUSTRATED, FORGOTTEN AND FED-UP: Atypical Acute Porphyria Patients STILL Stuck in Urinary Diagnostic Quagmire), I was presented with some game-changing information. There is […]