Don't worry about the questions, it's fine. A lot of people have never heard of it. I am fine with normal people not knowing about it, but i find it odd Pharmacists do! (yet Doctors don't...unless they are hematologists.)
Since there are MANY forms of Porphyria I am unsure what each of them do. I can tell you what I know about mine.
On a day to day basis, there is NOTHING we can do with medicine. Best things we can do for ourselves is to make sure we eat regularly. Any unknown bodily changes (puberty, menopause, excessive drug use, etc) can cause the disease to flair up.
If we need any form of help medically in extreme situations, luckily there has been a new form of treatment to us. It's called PanHematin. it is a partially synthetic, part organic drug made from human blood. Our bodies don't process our Hematin right, which help carry iron and such, which causes the porphyria. Luckily, Panhematin, helps us with that. It takes about 4 hours for it to be introduced to our bodies through infusion. It also has to be prepared right before use and can't see sunlight before use.
For a more personal experience, my mother is now the face of Panhematin and this video has been sent to doctors who want know more about the disease.