Fatiguing but Succeeding - Erin Fortin

I recently posted about paroxysmal nocturnal hemoglobinuria (PNH) on a social media page, hoping to make connections with other patients. Users commented on the post and discussed it with one another, which was…

After seven years of dating, my loving husband, John, and I got married on Oct. 10, 2020. It was one of the best days of our lives, spent with family and friends as we…

When I was in elementary school, I participated in a variety of physical activities, including dance, soccer, and softball. The latter was my least favorite because I was terrified of being hit with the…

Last week, I finally had a follow-up appointment after my hematologist had switched me back to Soliris (eculizumab) to treat my paroxysmal nocturnal hemoglobinuria (PNH). The checkup had been delayed multiple times…

You’ve been busy preparing for a doctor appointment that’s today. You have your notes from tracking symptoms, along with questions you want to ask. Maybe you’re a little anxious. You check in, wait,…

Have you ever seen a movie or funny internet clip where someone is running on a treadmill, and to help motivate them, a fishing pole is placed in front of them with something they…

Ever since I was little, I was programmed to believe that chasing the American dream was my main goal in life. To pursue that goal, I believed I had to do well in school,…

What are your go-to phrases for encouraging someone who’s going through a tough time? Do you sympathize with their situation and say you’re sorry, even though you haven’t had a hand in what’s…

My husband, John, and I recently started bowling with friends, and we’ve been enjoying it. Time seems to slow down when you walk up to the lane, take a deep breath, and line yourself…

Note: This column describes the author’s own experiences with Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.