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Anyone Here Familiar with Acute Intermittant Porphyria? Family member just diagnosed.
12.17.09 | chickensoup

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.


TOPICS: Miscellaneous; Your Opinion/Questions
KEYWORDS: geneticblooddisease; health; help; porphyria; vanity
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1 posted on 12/17/2009 4:06:36 PM PST by Chickensoup
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To: Chickensoup

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


2 posted on 12/17/2009 4:15:19 PM PST by dawn53
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To: Chickensoup

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”


3 posted on 12/17/2009 4:17:22 PM PST by Cindy
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To: Chickensoup
Prayers for you and yours.

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:

https://health.google.com/health/ref/Porphyria

4 posted on 12/17/2009 4:17:37 PM PST by mojito
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To: Chickensoup

was that what King George had?


5 posted on 12/17/2009 4:17:37 PM PST by babble-on
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To: Chickensoup

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.


6 posted on 12/17/2009 4:18:18 PM PST by IamHD
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To: Chickensoup

George III had it.


7 posted on 12/17/2009 4:18:34 PM PST by La Lydia
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To: Chickensoup
It's what King George III had.
8 posted on 12/17/2009 4:18:49 PM PST by Publius (Do you want the people who run Amtrak to take out your appendix?)
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To: Chickensoup

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.


9 posted on 12/17/2009 4:19:56 PM PST by milagro
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To: Chickensoup; CholeraJoe

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?


10 posted on 12/17/2009 4:21:59 PM PST by Jemian (Why do the nations rage? And why do the peoples imagine a vain thing?)
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To: Chickensoup

From the Mayo Clinic web site
http://www.mayoclinic.com/health/porphyria/DS00955


11 posted on 12/17/2009 4:36:00 PM PST by ol' hoghead (He is not here; for he is risen.)
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To: Chickensoup

ChickenSoup: Another link for you:

http://mayoclinic.com/health/porphyria/DS00955


12 posted on 12/17/2009 4:37:08 PM PST by fatnotlazy
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To: babble-on

I read that Princess Margaret had it. Princess Caroline of Monaco is married to a German prince and he has it.


13 posted on 12/17/2009 4:38:09 PM PST by goldi (')
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To: Chickensoup
I saw this on an episode of House.

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.

14 posted on 12/17/2009 4:38:58 PM PST by PeaceBeWithYou (De Oppresso Liber! (50 million and counting in Afganistan and Iraq))
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To: Chickensoup

http://www.porphyriafoundation.com/


15 posted on 12/17/2009 4:41:52 PM PST by EBH (it is the Right of the People to alter or to abolish it, and to institute a new Government)
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To: Chickensoup
Make sure that the porphyria is not a secondary condition.

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.

16 posted on 12/17/2009 4:41:53 PM PST by BossLady (Tigers Wood Count - 14th Hole)
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To: Chickensoup

I’ve always found webmd.com to be very useful.


17 posted on 12/17/2009 4:46:33 PM PST by taillightchaser (When a democrat says "The American people" you know the next words out of his mouth will be lies.)
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To: dawn53

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


18 posted on 12/17/2009 4:53:27 PM PST by Chickensoup (We have the government we deserve.)
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To: Cindy

Thank you I have left them a message. Still waiting


19 posted on 12/17/2009 4:54:20 PM PST by Chickensoup (We have the government we deserve.)
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To: babble-on

So I understand, but we have no disruptive colonies.


20 posted on 12/17/2009 4:55:51 PM PST by Chickensoup (We have the government we deserve.)
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