Welcome to my porphyria blog.

I have the pleasure of having inherited porphyria.  There are seven types depending on which enzyme step, in the production of heme, is faulty.   I’ve got acute intermittent porphyria (AIP); this occurs at, I believe, the 3rd step, which occurs in the liver.   What makes this very bad is that porphyria dumps lots of poisons (porphyrins) into my body and my liver has to take care of it.   Well, wouldn’t you know, my liver is already have a bad time producing heme…so, it creates a runaway situation.

Anyway, my goal in this blog to is to help others with porphyria.  I think that most of my actions would be helpful to folks with the other types of porphyria.

There are a couple silver linings – no expensive drugs or surgeries to control the porphyria!   And, I feel blessed to be married to a beautiful, understanding woman and to be born in this great country at this point in time.   If I lived in just about any other time or place, I probably would not have made it to adulthood.

Please feel free to join in the conversation or ask questions.

 

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