Acute Intermittent Porphyria (AIP)
"If you're at all interested in what they are doing to me in this Panhematin trial, I am happy to share. During the entire stay, the medical team accessed my port. They drew all the blood they wanted without all the usual IV sticks, which is nice. Every morning after breakfast we did the infusions, which may or may not be a placebo. Neither the nurses nor I were allowed to see what was pumping into me. So I am blindfolded and there are sheets hung in the room to cover the medicine and tinfoil around the lines. It takes only a couple hours to complete. I snoozed and chatted with the sweet nurse. Outside of that, the dextrose fluids are flowing in through my port 24/7. Otherwise, it was pretty uneventful. Why do I tell you this? Basically, I want to remind you of how important it is to volunteer as a research patient if you ever get the opportunity. There are lots of trials that even perfectly well people can do for various different studies and various different medical reasons."
~Tracy Yelen Nudo, AIP