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 to PNH News, treatments available for PNH mainly aim to reduce the destruction of…
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 of this journey can feel like climbing a ladder in a pitch-dark room, your arms outstretched…
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…
Get regular updates delivered to your inbox.