TO PATIENTS WHO ARE DESPERATELY AWAITING AN ACUTE PORPHYRIA DIAGNOSIS but haven’t “met the metrics” that is, haven’t excreted “required” urinary porphyrins/precursors, please, for your own safety and sanity, DON’T divulge your doctor(s) name and/or location to ANYONE in this or any other FB forum. Unscrupulous people have been floating among these forums for years. […]
Please note the author/patient posted his odyssey on a FB forum a couple of years ago. He agreed to participate in this Purple Canary NPAW compendium in hopes that the information and his experience might help other patients in managing their AIP. My first AIP attack occurred in late summer 1956 at age nine. To […]
In a perfect world, every acute porphyria patient would be identified, receive adequate and effective treatment as necessary (high-ticket, budget-busting pharmaceutical orphan drugs need not be the only option(s))–and maybe have a chance at retaining his/her position as a contributing member of society, even if it means in a non-traditional sense. But of course, this […]
Although I was an early talker at 4 months three months later I was given a medical diagnosis of failure to thrive. During my early years (age 3-4), I frequently suffered bad tummy aches after being in the sun. Even so, my mother was ordered by doctors to subject me to sun therapy because they […]
Although Rare Disease Day technically is observed each year on the last day of February each year, this year NIH announced it will hold a virtual Rare Disease Day on Monday, March 1, 2021. A bit of history On February 29, 2008, EURORDIS (the European Organisation for Rare Diseases) organized the first Rare Disease day. […]
Acute Porphyria Patient/Caregiver Discussion Paper: WILL US/EU PORPHYRIA EXPERTS MAKE A MOCKERY OF PRECISION MEDICINE AT ICPP?
As porphyria experts from around the world make their way to Milan’s 2019 International Congress of Porphryins & Porphyrias (ICPP), a group of acute porphyria patients/caregivers from various countries awaits the outcome of an ICPP roundtable session, “How to define acute attack of Porphyrias.” The acute porphyrias are metabolic disorders that fall within the disease […]