Posted on 12/17/2009 4:06:36 PM PST by Chickensoup
rare disease. Looking for docs etc. am researching on the net. Thought I would check with my Freeper family too.
Prayer appreciated.
Soup.
I know a bit about it, it was considered a possible diagnosis for me at one time. Turned out I had MS, not porphyria...but I had researched it before it was ruled out.
Here’s a couple forums...I found forums helpful when seeking info from people who actually had experienced the disease.
http://www.mdjunction.com/forums/porphyria-discussions
http://forums.wrongdiagnosis.com/showthread.php?t=4297
http://health.yahoo.com/search;_ylt=AqSjkplDHWLh5nHPlU96Mguz5xcB?p=porphyria
http://www.google.com/search?&rls=en&q=Acute+Intermittant+Porphyria&ie=UTF-8&oe=UTF-8
#
http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/AIP
“America Porphyria Foundation”
I have no first-hand experience with this disease, but the information at the following link seemed like a good place to start learning something about it:
was that what King George had?
There is a support group at http://www.mdjunction.com/forums/porphyria-discussions
I belong to another group at the same site but for auto-immune diseases that I am beginning to suffer from.
They may be able to answer some of your questions.
George III had it.
My husband was told he had that not long before he died of a massive and totally unexpected heart attack. So I don’t know a lot about it, except that it seems to be genetic, and adversely affects the liver. Know that with this disease, being in the sun a lot is NOT a good thing.
Nope, know only enough about it to recognize the name.
But, I’m SURE I have. ;o)
CJ, do you know anything about this condition?
From the Mayo Clinic web site
http://www.mayoclinic.com/health/porphyria/DS00955
I read that Princess Margaret had it. Princess Caroline of Monaco is married to a German prince and he has it.
It is a genetic blood disease where the patient lacks certain enzymes to remove toxins, something to do with the Heme forming enzymes. The nerves and muscles are affected by the toxins.
Treatment is mainly for the symptoms and avoidance of the triggers.
During attacks, Hematin is given intravenously. Sedatives may be needed to bring sleep, relieve anxiety and to calm the heart(severe). Dialysis is often used to remove the toxins thus lessening an attack.
A high carb diet is usually prescribed. Sunlight is to be avoided.
If the patient is a female and the porphyria seems to be intermitent...then check all hormone levels. Women on the Pill or women who have been on the Pill for long periods of time can show signs of Porphyria.
Also....check the liver enzyme levels...we have had patients show up with this that did not know they had Hep C as firstline causation.
I’ve always found webmd.com to be very useful.
we are still waiting for the second round of labs. She has each and every sympton including the red to purple urine during the attacks
Thank you I have left them a message. Still waiting
So I understand, but we have no disruptive colonies.
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