Hello dear, Thank you for your contact to health care magic. I read and understand your concern. I am Dr Arun Tank answering your concern. Yes you are right porphyrias are common genetically. But it is also true that the porphyrias are not curable you can only suppress it or you can get symptomatic treatment. Yes you are having a skin affected porphyria out of two porphyrias. Skin variety can cause blister, itching rashes etc when exposed to stimuli like sun rays, son drugs etc. So for you prevention of such a stimuli is your major treatment part. Secondly we can infuse the heme in your circulation which causes a heme production on halt and can reduce the symptoms of the porphyrias. As this condition affects the skin there is likely to be imbalance in body temperature maintenance. You can use ice for warm body and warm for cold body. I will be happy to answer your further concern on bit.ly/DrArun. Thank you, Dr Arun Tank Infectious diseases specialist, HCM.