I’m a fifth-generation porphyria warrior, and the generational curse ended with me in February 2021. That month, I had what’s called a bilateral salpingectomy, the surgical removal of my fallopian tubes, to prevent me from getting pregnant. Although it wasn’t an easy decision, it had to be done. In…

My alarm rang promptly at 8 a.m. so I could make it to work by 10. I still wasn’t feeling my best, but I found the strength to get out of bed and gather the clothes I needed to wear that day. For days prior, I’d spent hours rearranging and…

In a rare case, a young woman in Illinois experienced a porphyria attack and began developing symptoms of acute hepatic porphyria (AHP) a few days after having a progestin birth control implant placed inside her left arm, according to a new report. The clinicians noted that AHP has rarely…

People with inactive porphyria who choose to fast for a day as part of their religious observances generally don’t see any unusual porphyria symptoms, a recent study reported. The study, “A 25-Hour Fast Among Quiescent Hereditary Coproporphyria and Variegate Porphyria Patients is Associated With a Low Risk…

There is a general lack of understanding and awareness when it comes to pain associated with acute porphyria attacks. Porphyria pain is not well defined in research. It’s misunderstood by doctors and industry professionals, and it’s easy to see why. Pain cannot be objectively measured or seen, and…

I had a short-lived, yet severe, acute hepatic porphyria (AHP) attack in mid-September. Like a descending tornado, it came on fast, grew in intensity, and demolished everything in its path. Before surrendering to the funnel’s pull, I had to do something I both hate and dread: bail on loved…

I was already emotional before I checked in at the nurse’s station. More than a week into a severe acute porphyria attack, I needed urgent hospital intervention. My body was weak and my mind was disoriented. Luckily, the direct admission orders from my hematologist allowed me to bypass the…

I stacked a cling-wrapped tray of broccoli trees on top of half a dozen brats, then shoved them to the side of the middle shelf, revealing two blocks of tofu, a slightly wilting head of cabbage, and a storage container holding segments of an onion. Returning from the grocery store,…