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Acute Intermittant Porphyria - Articles

KRYPTOPYRROLE / HPU / HPL / PORPHYRIA / B6 & Zinc by Carlitos G. Patient Expert Posted Tue 10 Feb 2009 11:32am 1 Comment Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: (English) or (Spanish) My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvemen ... Read on »
My Porphyria Story - written by Penelope B. by Rudy S. Patient Expert Posted Sun 13 Jun 2010 9:35am   My name is Penelope. I'm twenty-seven years old and I have a rare blood disorder called Acute Intermittent Porphyria. It's one out of a group of eight porphyrias. AIP is an inborn error of metabolism. Basically, my body has a problem making heme, which is essential to bind oxygen and iron to blood cells. It causes ... Read on »
We're Back To Pain by Dr. Zagreus Ammon Medical Doctor Posted Mon 25 Aug 2008 2:52pm 1 Comment The problem is that it's always about the pain. I actually have had a patient come in and tell me "If I have to live with pain, I'll live with it, but what is causing it. I really need to understand it." I gave that guy narcotics. I had someone come in and tell me, I really don't like how they make me feel, so I don't t ... Read on »
The Puzzle Has Been Solved by Jennifer Jaff Patient Expert Posted Fri 02 Mar 2012 6:58pm If you've been following this blog closely -- and you really should -- you know that I love these medical mysteries the NY Times Well Blog posts about once a month. This months was a mysterious case of abdominal pain with no clear or easy diagnosis. I had no clue -- but here's the answer: Acute intermittent porphyria. Acute intermitte ... Read on »
Starry, Starry Night - Vincent van Gogh by Don McLean by Nancie .. Patient Expert Posted Sat 13 Sep 2008 11:49pm My friend and brother-in-Christ, George, emailed me this beautiful and touching PowerPoint presentation on the beauty of the works of Vincent van Gogh. It brings tears to my eyes as I watch this presentation as I can identify with the sentiments of both the painter (artist) as well as the singer. This is a presentation you should not miss. ... Read on »
Is Your Disease on the RARE List™ – If So, More Bad News! by Chris H. Posted Mon 06 Feb 2012 3:01pm I wonder if people truly understand what it means if their rare disease or disorder is on the RARE List™? Last week, the R.A.R.E. Project and  Global Genes Project , leading patient advocacy organizations representing the rare disease community, issued the RARE List™ , a stunning 65 page ... Read on »
Fighting The Good Fight - one woman's story by NicoleD Posted Fri 21 Jan 2011 12:04pm This is somewhat off topic, but so very important to us, that I felt the need to reach out to those readers who I may never have met in person, but may have a heart for the same as we do. My husband was friends with Melanie back in grade school and middle school and he recently found her again. She is fighting breast cancer, and, although this ... Read on »
Porphyria by Dr. Anshu Gupta Patient Expert Posted Tue 02 Jun 2009 4:40pm Porphyria is a group of different disorders caused by abnormalities in the chemical steps leading to the production of heme, a substance that is important in the body. The largest amounts of heme are in the blood and bone marrow, where it carries oxygen. Heme is also found in the liver and other tissues. Multiple enzymes are needed f ... Read on »
Porphyria – A modernized Vampire Disease? by Krystal Plonski Posted Fri 13 Jul 2012 10:28am Do you know how many teenie bopper sites I had to go through to find this image? The answer is too many. But it was well worth it, because I am *sooooo* Team Edward (twirls hair, giggles). But no, seriously, I am. My mom is Team Jacob. We’ve had some heated discussions about it. And have watched the movies. Don’t judge. ... Read on »
Porphyria Cutanae Tarda? by Kamal S. Patient ExpertHealth Maven Posted Thu 23 Jun 2011 10:40am Huh? Well, that's what they suspect my recent skin condition to be! My skin has become increasingly brittle. It cuts very easily. Barely do I scrape against a wall and my skin gets cut. I also get small blisters on my hands and feet from time to time. Yuck! So, I showed them to my nephrologist and he asked me to see a dermatologist. Th ... Read on »