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…
Blood markers designed to measure activation of the complement system, a part of the immune system involved in paroxysmal nocturnal hemoglobinuria (PNH), may not reliably reflect disease activity or red blood cell destruction in patients receiving complement-blocking therapies, a new study suggests. The researchers found that although these complement…
Discussion
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…
The first clinical report of a patient with paroxysmal nocturnal hemoglobinuria (PNH) switching from PiaSky (crovalimab-akkz) to Fabhalta (iptacopan) was reported recently. The patient in the report was a 72-year-old man who continued to experience PNH symptoms after an infection triggered…
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