To all my porph friends—patients, caregivers, their friends and family members, I apologize for having fallen off the face of the earth for a while though I tend to do that when the porph devil’s dancing in Jill’s liver and overdoing things again. Because of that, I’ve been back on the exhausting documentation trail—and once […]
Well, well, well. Seems something has gotten under the skin of some porph ivory tower dwellers and hangers-on. Mama Canary doesn’t kowtow to manipulative gaslighting—and knows what she reads. Methinks this individual and her followers need to review what “she” herself wrote in her 2014 memoir —and what she wrote nine years later. To clear […]
Home Genetic Tests May be Riddled with Errors… UPDATE…REQUEST UNDERLYING DATA FOR ALL DNA TEST RESULTS!!!!
On 4/3/2018 Huffpost published an article about home genetic tests titled “Home Genetic Tests May be Riddled with Errors, and Companies Aren’t Keeping Track” written by Anna Almendrala. It’s a great title; really draws attention. But it doesn’t tell the full story of how to find out if a snp is active or not. I […]
If anyone wants to learn about real heroes, all one has to do is tune into closed FB porphyria forums. Tossed aside because they haven’t achieved a “real” diagnosis (as Desiree Lyon Howe articulated during the March 1, 2017 FDA/APF meeting—evidentially to her, “real” means confirmed by APF “experts”), these remarkably brave patients cope with […]
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 […]
2018 is filled with promise. While I’ve not been super at keeping New Year’s resolutions in the past (and in fact, stopped making them years ago), I promise this New Year will contain revolutions of sorts. In fact, Purple Canary, The Girl Who Was Allergic to School: The True Story of How School Chemicals […]
As this very wearying year comes to an end and I find myself firmly ensconced in the 2017 holiday season, I realized that an inspiring gift had come via the Internet some weeks ago. Just words, it might seem an obscure, small thing to some, but to others, the 88 words meant someone got the […]
Sitting on your throne, royal down to the bone. Some say you deserve the Nobel Prize– a mirror reflection of their lies. You wear a crown with horns while we wear crowns of thorns. Too many are still fooled by your disguise: a perfect shape, perfect size, pretty little face with a nasty alibi. This […]
I know I’m not alone in thinking it highly inappropriate that the apf coalesced around an AIP index case who did not produce holy grail darkened urine “naturally” and then joined forces with a group to set the bar for diagnosing ALL acute porphyrias based on excretion levels of of U-PBG (which, as it turns out, […]
Analysis shows majority of “confirmed” acute porphyria patients diagnosed via “natural” excretion of darkened urine.
Hoping to distinguish the method of how “confirmed” acute porphyria diagnoses had determined, I recently analyzed 129 AIP, HCP and VP published cases. The results proved interesting: 60% noted they were diagnosed based on urinary biochemical testing following “natural excretion” of darkened urine during attack. 5% reported urinary biochemical testing of darkened urine following administration […]