The most common response I hear from doctors when I tell them that I have AIP is “Wow. Really? I haven’t even heard of that since medical school!” Many doctors do not know much about the disease and are therefore hesitant to take on Porphyria patients for fear of making them worse. The only current treatment available is an IV infusion of a substance called Panhematin. While the treatment has saved many patients' lives and is effective in reducing the symptoms in most patients, it’s an expensive and unstable drug that causes extreme side effects in some people, and it is not carried in most hospitals; ordering it can take days or even weeks.