Columns

Sometimes hope feels heavy. In the past several months, the porphyria community lost several beautiful souls. They were different in age, type of porphyria, and geography, but all were taken too soon. As I sit at my desk at the United Porphyrias Association office (where I serve…

I’m a fifth-generation porphyria warrior, and the generational curse ended with me in February 2021. That month, I had what’s called a bilateral salpingectomy, the surgical removal of my fallopian tubes, to prevent me from getting pregnant. Although it wasn’t an easy decision, it had to be done. In…

Everyone seems so very excited for spring. The birds are chirping, tree buds are sprouting, and the sun hangs hotter and higher in the sky for longer stretches each day. Well, almost everyone. Right on cue, this is when Shadow Jumpers — as we lovingly call our people living…

Note: This column describes the author’s own experiences with etonogestrel implantation. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. My arm was laid out to the side as my then fiancé and now husband, Daniel, held my hand. “Are…

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…