In The News

Chronic Chlamydia and Associated Porphyria
http://dynamics.org/Altenberg/MED/StrattonMitchell.v.4.html

ALN-AS1 – a potential treatment?
http://www.alnylam.com/Programs-and-Pipeline/Alnylam-5×15/Porphyria.php

Good description:
http://jrgray.hubpages.com/hub/Acute-Intermittent-Porphyria-an-Inherited-Blood-Disorder

In depth case study:
http://www.slideshare.net/rosesrred90/acute-intermittent-porphyria-case-presentation-16396581

Paper:  Women with acute intermittent porphyria have a defect in 5α-steroid production during the menstrual cycle.   http://onlinelibrary.wiley.com/doi/10.1111/j.1600-0412.2012.01536.x/abstract

There are some folks in Arizona that think Porphyria can be treated with marijuana! http://www.arizonamedicalmarijuanablog.com/2012/07/23/arizona-medical-marijuana-blog-medical-conditions-treated-with-marijuana/

Here is an abstract on gene therapy fo Congenital erythropoietic porphyria http://www.ncbi.nlm.nih.gov/pubmed/22795135

In this announcement from uniCure about gene thereapy, they mention that they are working on gene therapy for AIP! http://www.redorbit.com/news/health/1112660397/first_gene_therapy_in_western_world_receives_positive_opinion_in/

From the British Journal of Dermatology: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2133.2012.11154.x/abstract

FDA Safety & Innovation Act:  http://www.porphyriafoundation.com/node/576

This book claims that up to 20% of people may have some type of porphyria showing up as problems with stress, allergies, etc…I think that is an exaggeration; but, hopefully, it will lead to more research:  http://www.orgoneenergy.com/porphyria-book

Paper in Blood on diagnosis & treatment of porphyrias: http://bloodjournal.hematologylibrary.org/content/early/2012/07/12/blood-2012-05-423186.abstract

Paper released in AJHG: http://www.cell.com/AJHG/abstract/S0002-9297%2812%2900311-4

Curebird (interesting pictorial on heme synthesis): http://curebird.com/conditions/porphyria#.UACR1sVvVOw

This article mentions King George, vampires, and werewolves:  http://conwaydailysun.com/index.php/community/health/91148-dr-brian-irwin-porphyria

American Porphyria Foundation starting Pain Project to inform medical professionals of the pain we deal with:  http://www.porphyriafoundation.com/node/575

First known case of AIP in twins: http://annals.org/article.aspx?articleid=676570

New study on AIP (too technical for me):  http://www.ncbi.nlm.nih.gov/pubmed/22748422

NY Times Health/Science has some kind of challenge for readers to come up with a diagnosis; this one was about AIP:     http://well.blogs.nytimes.com/2012/03/02/think-like-a-doctor-doubled-over-in-pain-solved/

 

One Response to In The News

  1. Karen Winter says:

    Have You Suffered Needlessly For Years Not Knowing What Has Been Wrong With You All Your Life? Porphyra The Ultimate Cause of Common, Chronic & Environmental Illness By Steven Rochlitz, PhD Foreword by Randall Langston, M.D. As the cover indicates, this hidden problem is often “the last piece of the puzzle” for many chronic illnesses, and/or Environmental illnesses. What is Porphyria?

    I have been severely ill all my life with Porphyria, and now I am suffering from the consequences of this such as a PFO or hole in heart and many other issues.

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