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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…

After being diagnosed with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I felt alone and often asked, “Why me?” I didn’t understand why I’d been chosen to take on this tough health battle. The loneliness was intense and at times hard to bear. I…

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…

Battling aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) can be stressful. As the World Health Organization notes, “the way we respond to stress, however, makes a big difference to our overall well-being.” For me, stress is a huge trigger of PNH symptoms, such as fatigue, brain…

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…

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…