Columns

After being diagnosed with paroxysmal nocturnal hemoglobinuria and aplastic anemia, I’ve learned to listen to my body and identify specific symptoms when they occur. I experience an array of them, including nosebleeds, fatigue, blood in the urine, and headaches. By recognizing them, I can determine which ones target…

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I had a lot to process. I was told what PNH was, what its symptoms were, and that it was chronic and would last forever. But what stood out to me the most was the course of…

Last Saturday, I went to the movie theater to watch “A Quiet Place: Day One.” This film is a prequel to “A Quiet Place” and “A Quiet Place: Part 2.” As the movie began, I was introduced to the main character, Samira (“Sam”), played by Lupita Nyong’o. Then, I…

Since my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH), I inevitably have a conversation about my health journey each time I meet someone new. I’m an open book and will discuss what I’ve been through medically and continue to handle daily, aiming to invite a safe space for people…

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…