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I was a few weeks into a common cold, and late one evening I needed to lie down. My husband, Daniel, was already in the bed, so I made myself comfortable beside him by lying flat on my back, placing my hands on my chest and interlocking my fingers. I…

Last week was a rallying cry for rare disease patients, their families, and other advocates to make their voices heard. I spent time on Capitol Hill in Washington, D.C., standing alongside fellow advocates for a week of activity centered on Friday’s Rare Disease Day. Representing the United Porphyrias Association…

To whom it may concern, I, Kalyn Shelton, wish to return my body as well as my mind because of chronic fatigue, nausea, pain, anxiety, depression, and more. I received this item a little over 30 years ago and began experiencing severe issues in July 2020. Please be advised that…

My alarm rang promptly at 8 a.m. so I could make it to work by 10. I still wasn’t feeling my best, but I found the strength to get out of bed and gather the clothes I needed to wear that day. For days prior, I’d spent hours rearranging and…

Imagine being a little kid and your parent gives you a quarter for the machine at the store so you can get the shiny ball you’ve been eyeing since you arrived. You put in your money and turn the dial, waiting anxiously for that one ball. Then you open the…

When the youngest of my three sons was diagnosed with erythropoietic protoporphyria (EPP) in 2009, I was a hot mess. His gut-wrenching pain was unbearable for him, and it didn’t make sense that it stemmed from something as natural as sun exposure. I remember crumpling on the floor. I…

“In sickness and in health, until death do us part.” On April 27, 2019, my husband, Daniel, and I made the biggest commitment of our lives. Little did he know that less than two years later, sickness would overpower health. In July 2020, I started experiencing symptoms of acute…

The pain of an acute intermittent porphyria (AIP) attack is almost unbearable. It feels like someone is squeezing my right side with their fingernails, and it won’t stop. It has to stop. I almost can’t take it anymore. “Yes, I can!” I say to myself. I can get through…

As Thanksgiving approaches, I find myself reflecting on the concept of gratitude — not the surface-level kind we often recite out of habit, but the kind born out of adversity. Living with porphyria, or loving someone who does, can feel like navigating a storm. Yet it’s in the storm…

I recently had the honor of attending the National Organization for Rare Disorders (NORD) Breakthrough Summit in Washington, D.C., on behalf of the United Porphyrias Association (UPA). The annual Rare Diseases and Organ Products summit brings together advocates, patients, researchers, and healthcare professionals from the rare disease community to…