hi i have porphyria.. my specialists says its chronic, as im under constant attacks, the only thing she can do for me is the blood letting every 2 weeks, as my iron levels are way to high.. i really need the hematin iv drip, but Australia does not have it.. im trying to learn as much as i can about porphyria, but it is very confusing lol.. even the doctors here dont know much about it. they just told me its genetic and all my kids should be tested for it to.. my specialist and my 2 other doctors have never met anyone with porphyria.. so they think im rare and special lol.. i dont feel very special..