When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I felt shock and disbelief. I was fully convinced that I’d had a false positive and that, in my heart, the diagnosis couldn’t be true. I remember doing a quick Google search and seeing a Cleveland Clinic statement…
I was recently listening to an audiobook in which the main character had a stomach virus. It reminded me of an experience I had with a stomach virus that landed me in the hospital. That, in turn, led to a diagnosis of paroxysmal nocturnal hemoglobinuria (PNH). While I…
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…
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…
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…
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