Discussions By Condition: Rare Disases

Please describe your attack of porphyria

Posted In: Rare Disases 1 Replies
  • Posted By: Anonymous
  • October 30, 2007
  • 06:43 AM

Hello, I am almost positive that I had an attack of acute porphyria. I have been left with neurological abnormalities. It was one of the most horrible things I have ever experienced. By the time I could get a medical professional to believe me I believe that the attack was on its way out and the levels of porphryrins were not as high as they might have been if measured earlier on. Can someone with porphryia please give me a detailed description to the best of their ability as to what it felt like to them? I really want to know if it matches what I felt. I do not ever want to have to go through this again.

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    • January 6, 2008
    • 03:05 AM
    • 0
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