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…
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…
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