First in a series. Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me that some of the hardest decisions aren’t the ones we have to make today — they’re the ones we know we may have to face someday. For me, one of those decisions is the possibility of…
Discussion
Use of an experimental infusion therapy for paroxysmal nocturnal hemoglobinuria (PNH) helped increase the levels of hemoglobin — the oxygen-carrying protein in red blood cells — while reducing the need for blood transfusions among participants in a small trial. Data show the mid-stage clinical trial testing HSK39297, in the…
Discussion
There’s a common belief that giving back to your community requires endless energy, perfect health, or plenty of free time. The truth is, some of the most meaningful acts of kindness come from people who are facing their own challenges every single day, just like I am with paroxysmal…
Discussion
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…
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