Fatiguing but Succeeding - Erin Fortin

Sometimes I daydream about what my world would look like if there were a cure for paroxysmal nocturnal hemoglobinuria (PNH) other than a bone marrow transplant, which is a high-risk procedure. According…

No one thinks they’ll hear the words “you have paroxysmal nocturnal hemoglobinuria (PNH)” — until they do. No one is prepared to navigate a PNH diagnosis — until they must. The beginning…

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…

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.

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…

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…

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…

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…

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…