My sister has the same thing, she was diagnosed 10 years ago, she has blisters on her hands which she refers to as "break outs". she seems to get them when she injures her hand or is out in the sun. She is in a study now that is really working wonders for her. When she first got this they pulled her blood I think once a week to get her iron down. She also was getting treated for Hep C with peg/riv but she had to stop because her white blood count got too low, they decided to treat the porphyyria first then the hep c. Hope that helps you.
I know someone who has this and there is an over the counter lotion you can apply which really helps, i will send you a message with the name of it as soon as i here back from him. Poryphuria is generally brought on from hep c if you have a genetic predisposition for the disease. (german descent). I know he has occassional phlebotomy and has his iron levels checked frequently. Good Luck
Sorry ment to address post to you.....Leah
Thanks for the info. We are of german descent. They told her it was heratitary and that people with hep c get it. I would love to know the name of the lotion so I can tell her. She has a lot of scars from so many break outs. She also refuses to quti drinking a bottle of wine everyday, I don't think that is helping anything.
Alchol brings on the blisters, my friend had to quite drinking and the skin problems improved greatly. I will send you a message too. Leah