Columns

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…

I used to believe in a wonder drug for my rare disease. And I wasn’t alone in telling myself I’d be saved by a new treatment option for acute hepatic porphyria (AHP). In 2019, the U.S. Food and Drug Administration approved Givlaari (givosiran), a monthly injection intended…

Ever since my son Brady was diagnosed with erythropoietic protoporphyria (EPP) in 2009, my greatest hope has been that someday there would be a treatment for this devastating disease. At the time, I didn’t realize how many stars would need to align for this to happen. But now it…

Intentional or not, most of my writing happens in bed. It’s where I reflect on my day, journal my meditations, feel inspired by the words of others, and dissect my dreams. The world begins in my bed. Adorned with luxury cotton sheets and supportive pillows, it’s where I rest. On…

I lived with my rare disease for 19 years before finding answers. The first time I was hospitalized for an acute hepatic porphyria (AHP) attack, I was 32 and undiagnosed. Within 24 hours of admission, the floral arrangements began to arrive. Outpourings of generosity and concern came from…

Growing up, I loved playing bingo with both of my grandmas. The large hall held rows of tables filled with players trying their luck. I would eagerly play a couple of cards while each of my grandmas somehow managed to stay on top of dozens of them while simultaneously chatting…

Disclaimer: The opinions in this column are my own. The decision to have children is deeply personal and isn’t universally right or wrong.  I am 38 and choose not to have babies because of a burdensome rare disease. I’ve decided not to risk the 50% chance of passing on a…

Last weekend, we welcomed the expert physicians and researchers of the Porphyrias Consortium to the United Porphyrias Association‘s home base in Bethesda, Maryland, with the goal of networking and brainstorming about how to move porphyria research and knowledge forward. The event marked the first in-person meeting of this…