There are days when speaking up feels like the hardest thing I will do. Living with paroxysmal nocturnal hemoglobinuria (PNH) means balancing doctor appointments, treatments, fatigue, and the uncertainty that comes with a rare diagnosis. On those days, it would be easy to stay quiet. But I’ve learned…
Columns
One of the biggest lessons that paroxysmal nocturnal hemoglobinuria (PNH) has taught me wasn’t about medicine or lab results. It was about rest. For years, I viewed rest as something you earned. If I finished my work, cleaned the house, ran errands, and took care of everyone else, then…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, I expected the physical challenges. I knew there would be doctor appointments, medications, blood tests, and uncertainty about the future. What I didn’t expect was how much PNH would affect my self-esteem. Before my diagnosis, I was…
One of the toughest questions I’ve faced with paroxysmal nocturnal hemoglobinuria (PNH) isn’t if my treatment is working. It’s whether the symptoms I continue experiencing are left over from the disease or whether I’ve simply become accustomed to not feeling well. When you live with a rare chronic illness…
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.
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