Columns

About a month after my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH), I went to the supermarket because I needed a few items. I didn’t listen to my body at all or gauge how much energy I had; I wasn’t used to that new responsibility, which PNH required. I…

Recently, I was asked to provide advice to a fellow patient on how I handled coming out of remission from aplastic anemia and, at the same time, being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). Remission refers to the absence of symptoms or disease activity. In…

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. Since my diagnosis with paroxysmal nocturnal hemoglobinuria (PNH), I’ve become adept at listening to my body. I…

During my biweekly Soliris (eculizumab) treatments for paroxysmal nocturnal hemoglobinuria (PNH), I wear headphones to listen to music or a podcast, play games on my iPad, or read a book. I enter my own secluded world, oblivious to the noise and people around me. But during my…

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 exciting! But I didn’t agree with some of their advice and decided to intervene. They were…

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 entered this new phase together. We’d been told by those around us, along with movies and…

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 ball, which I couldn’t catch very well. But I’ll forever be grateful to the sport for…

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 both on my end and my doctor’s. There were scheduling issues, changed hospital rotations, and an…

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, and then are brought into the examination room, where you discuss your medications and have…

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 really want on the line? They extend their arms to grab the item, but the treadmill…