I use extreme caution using these terms. For instance, in my family, cucumbers are a know trigger; however, many porphyria sufferers enjoy cucumbers with no adverse
affects. On the other hand bananas are “known good”, in my family; while many in the porphyria club cannot eat bananas. Please be aware that what I write on this is what I see and hear about…that is why the title of the blog is My Porphyria. I do try to call attention to foods that bother others and not me; but, I cannot cover everything for everyone. Please be careful with all suggestions on this blog and every blog.
This goes well beyond food; the medical community has lists of safe and not safe drugs that are nothing more than guidelines & expectations. For instance, phenobarbital is a “known trigger” for porphyria; but, I have been taking it for over 20 years in the form of Donnatal (belladonna + phenobarbital). My prescriptions started when I did not know that I had porphyria; my diagnosis was irritable bowel. Before I added glucose and magnesium, Donnatal was my only method of addressing attacks…and, it worked (and still works) wonderfully. Additionally, when I recently had carpal tunnel surgery, all the doctors (hematologist, neurologist, surgeon, anesthesiologist) & nurses involved researched porphyria & had numerous conversations with me. There was so much prep that doctors & nurses not involved in the procedure came over and talked to me about porphyria. Even though they meticulously used “known safe” drugs, I had a massive attack.
“Known triggers” and “known safe” are as common as unicorns. When you hear these terms, please consider looking at other sources of information. However, consider anything they say is a “known trigger” as dangerous to you. If you see me using
those terms, please point it out & I will make appropriate corrections.
While on this subject, I use extreme caution choosing foods & putting together posts to this blog; the consequences of an error are extreme, as we are all aware. If I make an error, please forgive me and give me a shout out.