porphyria? [View all]
never heard of it till the other day when my baby- aged 20, was told that she might have it. the kid has been sick since she was 9, dx'd w/crohn's, and had the strangest collection of symptoms/problems/dx's that there ever was.
she was sent to an allergist because she was breaking out from the sun. after looking over her whole medical record, which is about 2 gig, and looking at her skin, etc, said she thought this might be it. after her looking into it, she also found several oddball things that finally made sense.
they are waiting for her to break out again, and they will biopsy the bumps. after that probably genetic testing.
her older sister and i are both almost as messed up as she is, and we have figured for a long time it is genetic.
i have read the wiki, and know that sometimes it can kill you, and that is about it. and the only real treatment is a liver transplant.
anyone know anything about this?
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