I developed a condition called hemochromatosis after breaking out with porphyria cutanea tarda in 2006. It was not pleasant. After a few more tests for Hep C and HIV . HIV being negative, but hep C was... View answer

next. thank you, XXXXXXX 54 yr old healthy woman. The pct porphyria cutanea tarda was dx 14 years ago ... View answer

I was tested for Porphyria in October of 2015. The specimen was a 24 hour urine collection that ... type of doctor should I see and can you review my labs to give me advice? My symptoms match this ... View answer

Is/are there type(s) of porphyria that can cause edema and metabolic neuropathy? How can I best learn more about hereditary diseases that might fit my symptoms? ... View answer

porphyria and have to have phlebotomy treatments at Ferritin above 50. 143 is the highest I've ever been. Today, my ALT measured at 68. It was 32 in December 2015. People with porphyria are at high risk of ... View answer

[I have PCT; sporadic, tested at mayo clinic, being treated in Minot ND have had 10 phlebs, ferritin was at 153 before the 10th phleb, I am seeing a blood specialist, I ask him questions about arthritis and skip problems... View answer

My internist thinks I may have a form of porphyria(?)...looking for help about this very rare disease. I have so many of the symptoms listed (not the type that affects skin), and have been suffering ... View answer

my wife is suspected of having porphyria, but no tests have confirmed. she has b pos blood type and I have o pos. we ve had two children together and symptoms started after first child. is there ... View answer

My daughter has symptoms of acute intermittent porphyria, her immunologist tested for porphyria but ... immunologist says there is no reason to retest. We can easily trigger an attack, 2 know... View answer

for an appointment at some new facility complaining of my porphyria-related symptoms that someone will ...i have a history of variegate porphyria and possibly coproporphyria in my family, as i am an ... View answer