I have 2 form of Porphyria... A.I.P & C.T.P. I know that Porphyria affects my blood (it destroys my platelets) & also affects my liver & kidneys. I ALWAYS have numerous bruises on my body... In every part of my body...even when i havent bumped into anything. Anyone have any thoughts or possible medication ideas that could help me??? I could really use some advice. The closest ones r over two hours away from me & since i cannot drive (due to severe seizures) its practically impossible to get someone to give me a ride... Im very frustrated...it makes me feel hopeless. Hemitin & blood infusions are the usual treatment for Porphyria doesnt help my Porphyria. AT ALL. The only possible cure for Porphyria is a liver transplant. However, doctors arent willing to do the surgery to fix me until i suffer from complete liver failure. My cousin & i are the only people who have been diagnosed with Porphyria in our county. I have only found 2 doctors that had ever even heard of my medical condition...& they knew very little. That is how incredibly rare it is. Regretfully, they have both moved to other states. Help!!! ~ Lost & Hopeless ~

I too receive venofer iron IVs treatments in cycles depending on my platlets and tibc numbers. Luckily I have only needed one blood transfusion and that was when my first pic became flooded from a bacterial infection and I became septic. I now have a chest port. But I have a great doctor here in Omaha nebraska, . Dr Luke Nordquist or Dr. Tribulato of Midwest Cancer Center...who has gotten me to place where I'm in less need if venofer and my oral med and being strict vegetarian has reduced my treatments. He treats aggressive. I am noticing a lot more bruising lately but I'm am extremely active with crossfit and rowing that I to have levels checked soon...I pray no bone marrow biopsy again. Good luck and keep me posted. Prayers and blessings to you! Julie