Columns

How I ended the generational curse that is porphyria

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…

Discovering my porphyria triggers was a long journey

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…

Fighting for change on Capitol Hill

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…

Thank you for writing, but we have a no-return policy

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…