Columns

I’ve heard people describe living with a chronic illness like acute hepatic porphyria (AHP) as a full-time job. But it requires much more than 40 hours a week, Monday through Friday. Between medication schedules, doctor appointments, insurance issues, advocacy work, and the healthy behaviors to prevent flare-ups or…

Last week was a big deal in the world of porphyria. Some of the most brilliant minds met at the International Congress on Porphyrins and Porphyrias (ICPP) in Sofia, Bulgaria, to share their knowledge and discuss novel research. With many of the strict COVID-19 limitations lifted, researchers were finally…

I was once in the hospital during the holiday season. At that time, I could only receive Panhematin infusions for an acute porphyria attack as an inpatient. I plugged my grandma’s ceramic, tabletop tree in next to the bedside, where its rainbow of colored lights shone brightly. I…

Bulgaria. Honestly, until recently, I could barely place the country on a world map. Yet over the past few months, I’ve had the honor of organizing a patient day during this year’s International Congress on Porphyrins and Porphyrias (ICPP), set to take place in Sofia, Bulgaria, Sept. 4–7. Participating…

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…

We recently returned from a college visit for my youngest son, Brady, who lives with erythropoietic protoporphyria (EPP), an ultrarare disease characterized by extremely painful phototoxic reactions to sun exposure. I can’t believe we’re already looking at college! Wasn’t I just prepping his kindergarten teacher to help manage…

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…

The last thing I remembered was screaming out for him as he turned his back to me and vanished. Then, suddenly, I was alone on my couch with clenched fists. Blinking, I looked around, taking in the flashing screen saver of my television and the small puddle of drool on…

“National Stay Out of the Sun Day” happened last weekend, on July 3. This awareness day highlights the effects of sun exposure and the need to protect ourselves from them. I was not aware of this day until my savvy fellow columnist, Claire Richmond, clued me in. Any…

Note: This column describes the author’s own experiences with Givlaari. Not everybody will have the same response to treatment. Consult your doctor before starting or stopping any therapy. I used to believe in a wonder drug for my rare disease. And I wasn’t alone in telling myself I’d be…