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Thread: Porphyria

  1. #1 Porphyria 
    Forum Freshman LadyJava's Avatar
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    Nov 2004
    I am just curious to people's knowledge on porphyria, a very real medical condition. I have seen comparisons to vampirism, but, would like to hear about first hand information, or better, from someone who truly suffers from this illness. Thank you!

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  3. #2 Porphyria 
    Join Date
    Mar 2005
    Hello, I joined to respond to this becuase I am happy to hear of a genuine want to learn about this disease. I have acute porphyria and am part of a few support groups online full of folks that are wanting to get as much public education/awareness of the disease as possible. There is so much to say, but I hope you are still around and wanting your questions answered. I am happy to share my story and anything you would like to know.
    Because I have an acute form of the disease, I do not have sun sensitivity. I suffer from abdominal pain that is very severe and from attacks that can happen when exposed to certain things (like medications for instance).
    Please feel free to email me or ask me anything that you would like. I appreciate your willingness to learn about this.
    Hope you are well,

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  4. #3 Two forms of Porphyria 
    New Member
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    Feb 2005
    Tampa, Florida
    There are several forms of porphyria. A friend of mine had Erythropoietic Protoporphyria. In this disorder, the victim cannot produce ferrochelatase due to a defective gene. Ferrochelatase reacts with protoporphyrin to produce heme which is used in red blood cells (hemoglobin). Since protoporphyrin cannot react, excess porphyrins build up in the blood and tissues. The porphyrin molecule is similar chemically to chlorophyll and, like chlorophyll, reacts to light producing free radicals. The victim is very sensitive to sunlight which causes blistering and swelling, especially on the backs of the hands. As long as one doesn’t spend a lot of time in the sun and uses sun screen this condition isn’t all the bad (or at least it wasn't that bad for my friend).

    It sounds to me like our friend Mr. Thankstojesus may have Acute Intermittent Porphyria. I would like to know if this is the case. This condition is also caused by a defective gene but in this case two porphyrin precursors, porphobilinogen and amino-levulinic acid, build up. I don’t know how these chemicals cause the symptoms.

    I have never known anyone with this condition but it sounds like it could make life really miserable. I sympathize.
    Garth Wayne Gairrett
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  5. #4 thankstojesus 
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    Oct 2005
    Hi there 'thankstojesus'.

    Id really like to hear your story if youre willing to share.
    My father suffers from an apparent porpheria disorder and without getting into too much of a sop sop history of his gut wrenching accounts, id like to contribute if I can.

    From what I understand of Porpheria, is that it is not curable only treatable. It is congenital. *darn it!*. And also we were told that, it can't be diagnosed only deduced from other possibilites. So indeed my father may not even have the defective gene. ??.

    Anyhow, I too sympathize with you, from what ive seen and experienced, I could not wish that upon anyone.

    It seems that, with this disorder, strength of spirit is vital. "Whatever that really means".
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  6. #5  
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    Oct 2005
    Best source of info is the Mayo Clinic handbooks on medical conditions, or information from a major medical center. It's impossible to discuss Here, either in the detail needed or the accuracy, plus supporting medical references, to any fraction of the quality that such websites can give.

    Do a Google search and read ONLY the material from a major medical center, preferably university, located in your region. Porphyria is a rather rare condition and good treatment centers are not going to be outside major metro areas of less than a few millions, with the exception of Rochester, MN.
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