Columns

If you asked someone what a survivor looks like, they might picture someone standing on top of a mountain, hands raised, smiling because they finally made it through the storm. They might imagine strength as looking loud, fearless, and untouchable. But as someone living with paroxysmal nocturnal hemoglobinuria (PNH),…

Nine years ago, I heard words that would completely change my life: I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). At the time, I felt overwhelmed by fear and uncertainty. Like many people diagnosed with a rare disease, I had never heard of it before. Suddenly, I found myself…

On May 16, I had the opportunity to attend a patient and family conference in Tampa, Florida, with the Aplastic Anemia and MDS International Foundation, and I walked away with something much bigger than the usual information and resources. I left with connection, understanding, and a renewed sense of…

Note: This column describes the author’s experiences with Fabhalta (iptacopan). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. There’s something powerful about being able to say, “This is getting better.” After the uncertainty that came with my recent medication change for…

There’s a certain kind of exhaustion that comes with living with paroxysmal nocturnal hemoglobinuria (PNH) that isn’t just physical. It’s emotional, mental, and sometimes even spiritual. Recently, I found myself back in that space after experiencing a flare-up with symptoms that reminded me just how unpredictable this disease…

One of the hardest lessons that comes with living with paroxysmal nocturnal hemoglobinuria (PNH) is learning that control doesn’t always look the way you thought it would. Before a PNH diagnosis, control can feel straightforward. You plan your days, set your goals, and expect your body to cooperate.

As a patient, when you first hear the words “paroxysmal nocturnal hemoglobinuria” (PNH), life can suddenly feel very small and uncertain. It’s not only because of the diagnosis itself — it’s also the realization that most people have never heard of the condition. Explaining PNH becomes part of your…

Living with paroxysmal nocturnal hemoglobinuria (PNH) changes many things, but one of the most meaningful shifts happening in the PNH community today is the growing focus on quality of life. For years, conversations about rare diseases focused mainly on survival and symptom management. Today, patients, doctors, and advocates…

If there’s one thing living with paroxysmal nocturnal hemoglobinuria (PNH) teaches you, it’s that life rarely follows the script you wrote for it. For many of us, PNH didn’t just change our health; it changed how we measure time, how we define strength, and how we celebrate the quiet…

Living with paroxysmal nocturnal hemoglobinuria (PNH) is not something you plan for. It’s not something you see coming. One day, life feels normal, and the next, you’re learning a new language made up of lab results, infusion schedules, symptoms (including fatigue that doesn’t go away), and a kind of…