While people with paroxysmal nocturnal hemoglobinuria (PNH) have access to a range of approved medications that effectively control the rare acquired disease, their administration can be time-consuming and may disrupt patients’ work, travel, daily activities, and family life, creating a large time burden. That’s according to a new study…
Discussion
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…
Discussion
Use of the approved injection therapy Empaveli (pegcetacoplan) appears to be effective and generally safe for people with paroxysmal nocturnal hemoglobinuria (PNH) — especially for patients who, despite treatments, have ongoing destruction of red blood cells, known as hemolysis. Those are the findings of a new analysis from…
Discussion
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…
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