If anyone has doubt about APF’s agenda to keep acute porphyria rare, here’s something from an 2018 Alnylam Pharmaceutical Earnings Call Transcript* in which an Alnylam executive assured a querying investor, “let me emphasize that porphyria will remain an ultra-rare disease…we’ve been working with the porphyria network to strengthen the next set of physicians….” Yup, […]
APRIL 6 – 13, 2019 NATIONAL PORPHYRIA AWARENESS WEEK Finally! An organization that understands… The New York State Rare Disease Alliance: A Place for Patients and Caregivers Who are the True Experts in Rare and Complex Disease Care This is why Closed Facebook Forums dedicated to Porphyria were established long ago and have continued to flourish […]
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 […]
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 […]
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 […]
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 […]
——————————————————————————————————————————————————————— Excerpt from Purple Canary Prologue, pg. 5: “You have to attack with the madness of a mother whose child is surrounded by predators,” blogger Jonathan Morrow wrote as he urged marketing professionals to fight for their ideas. His statement galvanized me–and jogged a memory: several years earlier my sister and I had attended a […]