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
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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
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.
Couple of thoughts. This is an orphan disease, so named because there are few with this condition. with that in mind, the followings is submitted for your consideration:
There will be few real specialists in the disease. Find one.
Avoid any doctor who claims to have the “miracle cure” or treatment. There are plenty of scammers with MD after their names.
Get involved with an Internet group, but choose two or three to start with. Settle on the one with LEAST “off the wall” ideas.
Do not depend just on the net. Get a phone number and personally speak with anyone who you accept advice from. A lot of so called “lay medical experts” can write well, especially if they have a chance to edit themselves, but on the phone, sound like the scammers or weirdos they are. A few years ago, we did a story on some South American board-certified female physician who had discovered the cure for adult-onset diabetes. She was all over the ‘net.
“She” turned out to be a guy named Sid and have a 201 (Newark, NJ) phone number. Sid had been thrice convicted of mail fraud.
Good luck.
Or is my memory deteriorating badly?
Prayer sent