Story about Porphyria .

Hemochromatosis & Porphyria

Mar 31, 2019

By: Ann Marie

Year Condition Began: 20


Hereditary hemochromatosis runs in the family but no one will get tested. It’s the building block for Porphyria cutaneous tarda to form. Ignorance and denial is a common trait; if you can’t see it, it doesn’t exist! That’s funny because once it consumes you, your life “rearranges and reprioritizes”! Family and Doctors don’t understand because they don’t understand or “see” the illness. I believe that you are your best advocate and need to learn everything you can to make your life more “doable”. I learn something new weekly because I never stop listening, looking and reading!

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