My favorite room in our home is the three-seasons front porch. It overlooks the west side of our house, where, this summer, we planted a pollinator garden. Nine months out of the year, this is where you’ll find me writing, meditating, or reading. Lenny will perch on the…
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On a sunny day last week, I was grateful for the energy to be able to enjoy an early autumn evening in the backyard. My partner sat in the patio swing and the kids ran around in the grass. I wandered over to our small vegetable patch, where tomato plants…
Last week, on Sept. 18–20, the American Academy of Dermatology Association held its annual legislative conference in Washington, D.C., where several hundred dermatologists and patient advocates gathered to discuss healthcare policy issues and advocacy. Then, on Sept. 20–22, the Coalition of Skin Diseases (CSD) held its Hill Day,…
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…
Recent Posts
- Finding a balance when you’re both the patient and the caregiver
- Sun-safe camp builds confidence in young patients with rare porphyrias
- Porphyria Palooza was an educational and uplifting family reunion
- Experimental EPP therapy increases pain-free time in light in trial
- I wouldn’t survive a zombie apocalypse as someone with chronic illness
- Prolonged AIP treatment helps woman recover after severe attack
- Preventive treatment cut attack risk in small acute porphyria trial
- How a random book led to a porphyria diagnosis that saved my sister’s life
- Seasonal bias may alter how EPP patients recall their symptoms