The day of my diagnosis was the first glimpse into my resiliency and willpower. That morning, my doctor called with test results indicating acute hepatic porphyria (AHP). Anger, sadness, fear, and wonder all came crashing into me, knocking me sideways and then completely out of my body. Suspended…

When it comes to chronic illness, I’ve often wondered if living by limited boundaries and conserving energy would prevent my lowest lows. I appreciate how the spoon theory, a popular analogy in the chronic illness community about conserving mental and physical energy, simplifies energetic deficits for people who don’t…

I have to stop beating myself up for being unable to accomplish things my healthy body could. The day I achieved a personal record running a 10K, I couldn’t celebrate because my head was in the hole of a port-a-potty. When I coasted across the finish line on a downhill,…

Traveling may put you at an increased risk if you have porphyria, depending on the type of disease you have. Here is some information that may help you to have a successful, safe trip. What is porphyria? Porphyria refers to a group of disorders in which…

Abnormal non-gastrointestinal symptoms in patients with Crohn’s disease may indicate the presence of acute intermittent porphyria, a case report of a 23-year-old patient shows. The study, “Acute Intermittent Porphyria – an Unexpected Association in a Patient with Newly Diagnosed Crohn’s Disease,” was published in the Journal of…