Message me if you do or if you have questions. I’m alone in this journey being diagnosed only two weeks ago. Although it answered a lot of things my body does but it still feels scary, lonely, etc. it’s just too rare of a disease, or it’s just not tested enough for people who could have it and have no idea..it’s hereditary. My mom has it. I have it. So I don’t think it’s as rare as they claim it is. I just think like many other autoimmune disorders the flare up’s can mimic many other things and no one thinks to do a porphryia test.