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Group Description

Ask yourself how one doctor can totally disregard your "lower elevated levels", medical history, family history and your own doctors opinion and decide you don't have Porphyria without ever looking at anything besides your porphyrin levels? And how can one organization say that NO ONE in the USA is qualified to diagnose you or do your DNA but their doctors? And how can one organization make the rules for EVERYTHING pertaining to this disease when they control the drug, the research, the doctors, the DNA and the diagnosis and get money for it because it's rare? This is unheard of for any other condition but Porphyria.
This Porphyria support group is to debate the questions we all have about Porphyria. We discuss diagnostic dilemmas including testing methods, drug lists and how to choose the best one, conflicting information and how to choose the right choice for you, and what to do if you get the "further testing required" that so many people get even though it has already cost you thousands of dollars and several doctors. All are welcome but some of these discussions may get a little stressful and confusing. We are not experts or doctors but we have learned survival skills and want to share them. There are things you can do while waiting for that elusive diagnosis that will keep you from being damaged further. Those things are free and entail using common sense, no bad drugs required. All will be moderated to ensure there is no flaming of other members. The enemy is Porphyria, not each other.

I'm hoping to reveal the ongoing dilemma in testing and diagnostc methods and put together convincing evidence that the "experts" are turning their heads and not seeing the obvious. I'm hoping to show that people can test "upper limit of normal" and still have the "real thing". I'm hoping to show there is a link between MCS and Porphyria although what that link is is still a mystery that needs to be clarified. I'm hoping to show there is a gentic link between those who hav

Group Information

  • 29
  • Porphyria
  • Mar 20, 2008
  • English

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