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porphyria

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  • ECrook33@xxx.xxx
    I originally got on this list to try and find someone with symptoms like my daughter. Since then we have been to yet another doctor who thinks she may have
    Message 1 of 4 , Aug 5, 1999
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      I originally got on this list to try and find someone with symptoms like my daughter. Since then we have been to yet another doctor who thinks she may have AIP. ANY INFORMATION WOULD BE HELPFUL.we are still struggling. If I am not using this list right someone please explain it to me. This too is new.

      thanks,
      Edith
    • Susan.L.Rump@xxxxxx.xxxxxxxxxxxxxxxxx)
      Edith, what s AIP--autoimmune something? Susan
      Message 2 of 4 , Aug 6, 1999
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        Edith, what's AIP--autoimmune something?
        Susan
      • emtech-journey
        A quick search of search engine www.alltheweb.com displays multiple links to sites with info on this rare metabolic disorder. One such link at
        Message 3 of 4 , Aug 6, 1999
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          A quick search of search engine www.alltheweb.com displays
          multiple links
          to sites with info on this rare metabolic disorder.
          One such link at http://members.tripod.com/~theaipforum/ shows:


          ================================================================
          Acute Intermittent Porphyria
          ��� Best viewed at 800x600 or higher.

          Welcome to "The AIP Forum" !!!
          What is Acute Intermittent Porphyria (AIP) you ask?

          "AIP is a rare disease that is inherited from one parent. It is
          almost always latent (i.e. does not produce illness) in childhood
          and is usually latent in most adults throughout life. When the
          disorder is active it can cause intermittent attacks of abdominal
          pain as well as a variety of other symptoms which range from mild
          to life threatening. After the correct diagnosis of AIP is made,
          simple precautions can be taken to prevent attacks. It is
          important to check all relatives of porphyria patients for the
          genetic defect, so they can take the same precautions and avoid
          becoming ill from porphyria. Even relatives who have never had
          symptoms should be tested"
          -- The American Porphyria Foundation

          That's The Goal Of This Page... Prevent Attacks....
          Especially those "life threatening attacks" !

          Hopefully you will find useful information at this site,
          including the links below. Also, if you need any assistance in
          searching for information or would like to comment, please
          contact us.

          The Links...


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          Good luck!
          ----- Original Message -----
          From: <ECrook33@...>
          To: <iem-family@onelist.com>
          Sent: Thursday, August 05, 1999 3:55 PM
          Subject: [iem-family] porphyria


          > From: ECrook33@...
          >
          > I originally got on this list to try and find someone with
          symptoms like my daughter. Since then we have been to yet another
          doctor who thinks she may have AIP. ANY INFORMATION WOULD BE
          HELPFUL.we are still struggling. If I am not using this list
          right someone please explain it to me. This too is new.
          >
          > thanks,
          > Edith




          ECrook33@... wrote:

          > From: ECrook33@...
          >
          > I originally got on this list to try and find someone with symptoms like my daughter. Since then we have been to yet another doctor who thinks she may have AIP. ANY INFORMATION WOULD BE HELPFUL.we are still struggling. If I am not using this list right someone please explain it to me. This too is new.
          >
          > thanks,
          >
          > Edith
          >
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        • ECrook33@xxx.xxx
          SUSAN, AIP IS ACUTE INTERMITTANT PORPHYRIA. IT IS THE NEW POTENTIAL DIAGNOSIS. HERE WE GO AGAIN! WE HAVE TO HAVE THE TEST AND SEND IT OFF TO MAYO AND SPEND 6
          Message 4 of 4 , Aug 7, 1999
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            SUSAN,

            AIP IS ACUTE INTERMITTANT PORPHYRIA. IT IS THE NEW POTENTIAL DIAGNOSIS.
            HERE WE GO AGAIN! WE HAVE TO HAVE THE TEST AND SEND IT OFF TO MAYO AND SPEND
            6 MORE WEEKS WAITING. HOWEVER THE SYMPTOMS SEEM TO FIT AND IT WOULD EXPLAIN
            THE EPISODIC NATURE OF HER PROBLEM. I WILL LET YOU KNOW MORE WHEN I KNOW
            MORE, WHICH AT THIS RATE MAYBE WHEN SHE IS OLD AND GRAY.


            EDITH
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