Suggest Treatment For Porphyria

I have sores on face arms chest mouth legs sometimes after surgery, after anaphylatic reaction. Sunlight burns my skin I have pain in my bones. I have liver disease. Went to different physicians. Finally a dermatologist says I have porphyria. I have asked my physicians to help me and they are doing nothing. I keep hearing you are fat maybe sleep apnea. I want to know what kind of physican do I need for the porphyria?